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Public Comment Index for the National Alzheimer's Project Act

Publication Date
Aug 13, 2020

The Advisory Council on Alzheimer's Research, Care, and Services, as well as the agencies/organizations that are in the National Alzheimer's Project Act, invite anyone to submit comments. Comments can be about Advisory Council meetings, NAPA and its documents, or issues involving Alzheimer's disease and related dementias. Emails can be sent to napa@hhs.gov and will be included on this page. Emails considered threatening or offensive, or found to be spam, will not be included on this page. Slight editing may be necessary when included, but email context will not be changed.

Information can be found by chosing typing a keyword, phrase or name in the "Search for..." box above (under the date this page was last updated).

Public Comments made at Advisory Council meetings are included here, but can also be found with meeting material available at https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services-meetings.

PLEASE NOTE: The Public Comments included on this page are not an endorsement of the views or information by National Alzheimer's Project Act, its Advisory Council members, the Administration, or the federal agencies and organizations involved.

Comments and questions, or alerts to broken links, should be sent to napa@hhs.gov.
Also contact us if you would like a topic added here.


2020 Comments

JULY 2020 COMMENTS

A. Lam  |  07-30-2020

I am the Medical Research Program Director for the Physicians Committee for Responsible Medicine. We are a non-profit health advocacy group based in Washington D.C. with over 12,000 physician members. The COVID-19 pandemic has exposed issues that we as the Alzheimer's Disease and Related Dementias (ADRD) community have known for some time. Although it has been encouraging to see the presentations on how we may address emergency preparedness and advance health equity, these are not sufficient. Disparities in care and in research have clearly widened due to the global pandemic. The cracks in our ADRD systems of care have now become fissures.

Although the Advisory Council had already recognized that diversity and health disparities were major issues prior to COVID-19, fundamental issues were not addressed. Roadmaps and research implementation areas were being developed, but in practice the National Plan largely conceptualizes these issues as being addressed in clinical trials and care services. We call on the Advisory Council to recommend immediate action by the National Institutes of Health (NIH) to integrate diversity and health disparities factors throughout the entirety of the therapeutic development process. Relegation of the study of these factors to "the population studies and precision medicine" implementation areas or cross-cutting themes of the National Plan are insufficient. Integration of diversity must be foundational and start with human-based research in the therapeutic discovery phase within "disease mechanism and translational tools".

Thanks to substantial commitments from the public, the NIH has resources to immediately carve out new priorities to address these gaps in ADRD preclinical research. Without these human-based approaches that factor in diversity we hold back our understanding of ADRD and we prevent potential therapies from being developed and effectively applied in a highly heterogeneous society.

To be clear: Understanding human diversity will require human-based approaches. We cannot and should not reduce highly complex risk factors and human diversity factors into narrow subsets of features in animal models.

Fortunately, there are multitudes of modern ways to study the impact of human diversity on ADRD throughout many scales of biological and environmental interaction. We urge the national leadership to rebuild the framework of scientific practice. Research of diversity factors in ADRD must be clearly indivisible from research of the mechanisms and phenomenology of the disease. This should start by the creation of a new action plan for diversity factors in preclinical research.

Our six specific calls to action include:

  1. REPORTING & REPRIORITIZATION: Report the number of animal model grants. Shift this funding towards human-based methods of human diversity.

  2. CREATE NEW FUNDING: Create new dedicated human-based neuroscience research funding and other resources for high-quality basic neuroscience and preclinical ADRD research. These new projects must explicitly address human diversity factors. These opportunities may take the form of new Concept Clearances and RFPs that specifically stimulate research areas for human diversity using exclusively human-based methods.

  3. CHANGE THE REVIEW PROCESS: Overhaul the scientific review process so that (a) human-based research and (b) diversity are major factors in the scientific criteria and numerical "impact scores". It is inadequate to consider these only as "non-numerical scores".

  4. DIVERSE BIOSPECIMENS & NEW PARTNERSHIPS: Coordinate new partnerships that increase the availability of diverse human biospecimenrepositories. Set a timeline to ensure that resources are developed to represent disproportionally affected groups, such as ethnic and rural populations.

  5. HUMAN-BASED TRAINING: Create (a) new training programs for early career scientists where human-based diversity factors are foundational to their research and (b) new retraining requirements for established researchers to replace outdated approaches with modern human-based approaches that address diversity. The training should advance human-based methods and theoretic frameworks. It will be important to strongly partner -- equally and ethically -- with the communities experiencing health disparities.

  6. DIVERSITY & HUMAN-BASED RESEARCH TASK FORCE: Given the urgency of the matter and the disparities intensified by the pandemic, a taskforce should be created as soon as possible to implement the above recommendations. The action plan should be enacted by the next National ADRD Research Summit. The task force should include representation from all stakeholders.

We have no time to waste. As others have spoken today, we can emerge from this crisis more inclusive and equitable. The positions that the committee takes can make all the difference. You can help rally broad support for these most needed priorities of diversity and addressing health disparities in preclinical research, leading to better care and wellness for all. The Physicians Committee stands ready to help the Council and NIH in the next bold stages of the research priorities in the National Alzheimer's Plan.


N. Super  |  07-29-2020

  • Good afternoon! I am Nora Super, Senior Director of the Milken Institute's Center for the Future of Aging. Today, I'm happy to announce the creation of the Alliance to Improve Dementia Care, of which I will serve as Executive Director. [https://milkeninstitute.org/centers/center-for-the-future-of-aging/alliance-to-improve-dementia-care]

  • Last November, the Milken Institute released a comprehensive report to examine the evidence and put forward 25 actionable recommendations to reduce the cost and risk of dementia. We believe these recommendations align well with the goals of the Advisory Council on Alzheimer's Research, Care, and Services -- especially those that were presented today as cross-cutting recommendations. [https://milkeninstitute.org/reports/reducing-cost-and-risk-dementia]

  • After consulting with a broad network of stakeholders, we identified the need to establish an Alliance focused on improving dementia care to move these recommendations forward.

  • Using the convening experience and expansive network of the Milken Institute, the Alliance will bring together partners from health systems, industry, research, advocacy, philanthropy, and government to better communicate, collaborate, and advance recommendations to improve dementia care. [https://milkeninstitute.org/new-about]

  • We believe the Alliance comes at a critical moment to ensure we build workforce capacity and implement comprehensive dementia-care models to effectively identify people at risk for or living with dementia, tailor services to meet their needs and those of their caregivers, and ensure they get the right care at the right time.

  • With support from founding members AARP, the Alzheimer's Association, Bank of America, Biogen, and The John A. Hartford Foundation, we seek to partner with leaders across multiple sectors to create solutions to optimize the workforce, build system capacity, and integrate services and support.

  • We are also deeply committed to developing and promoting policies that reduce disparities in prevalence and access to services for populations at the highest risk for dementia, including women and communities of color.

  • The Alliance to Improve Dementia Care is accepting new members and supporters. For more information on the Alliance to Improve Dementia Care, please visit the Milken Institute website https://milkeninstitute.org/centers/center-for-the-future-of-aging/alliance-to-improve-dementia-care.


B. Ker  |  07-18-2020

i am against the use of animals in this and find the use of dogs, monkeys, cats, etc where they are terribly abused and then to be nothing but sadism. the fact is you use millions of anmals eveyr month at the nih and this waste is disgsuting. find people and find out what they ate, what their bdies are doing. there is absolutely no rason ever to use animals. and subject them to this horror. nih is wasting our tax dollars with their research. they paid somne lady named elizabth who was working on moneksys and subjecting them to terrible abuse for 30years and she found nothing o fhelp. nothing. we wasted our moneyu to give her a cushy job where she just killed animals for her worthlessness. this needs to stop. we are outraged over this misuse of animals in labs. it needs to be stopped. we do not want our tax dollars used for this purpose. this comemtn is for the public record. please receipt.


K.L. Haggerty  |  07-16-2020

I am Project Director at Education Development Center, a non-profit research and development organization. I prepared these public comments with Dr. Epstein-Lubow, a geriatric psychiatrist at Butler Hospital and Associate Professor at Brown University and Dr. Reuben, Professor of Medicine and Chief of the Division of Geriatrics at the David Geffen School of Medicine at UCLA. These comments are our own.

In an public comment at the January 27, 2020 meeting, we stated that the Assistant Secretary for Planning and Evaluation (ASPE) and this Advisory Council must address payment reform for dementia care and treatments. There are at least six working models in the US for dementia care that improve quality, achieve better clinical outcomes for persons living with dementia and caregivers, and some lower costs; but, dementia care using these models is not widely available.

ASPE should be aware that on Nov 7, 2019 a one-day meeting focused on "Payment Models for Comprehensive Dementia Care" convened over fifty clinicians, researchers, advocates, payers and other leaders with expertise in dementia care and healthcare payment. The conference was heldin Washington, D.C. with support from The John A. Hartford Foundation, Hebrew Senior Life, and Education Development Center. During the conference, these experts reviewed short-term solutions for payment reform and discussed next steps for accelerating the use of current and new payment models. A manuscript describing conference outcomes has been accepted for publication in the Journal of the American Geriatrics Society. The manuscript includes recommendations for improving access to comprehensive dementia care through payment reform, research, education and advancement of a population health approach to coverage based on risk and need. HHS should consider the expert recommendations in this manuscript when it becomes available.

In addition, HHS should act now to advance payment reform efforts through three activities:

  1. Continue work previously conducted by ASPE regarding Examining Models of Dementia Care, and how they have been modified during the COVID-19 pandemic;

  2. Convene at least one work group to address payment reform for comprehensive dementia care; and,

  3. Begin immediately to monitor how the inclusion of dementia as a risk adjustment modifier in the CMS Hierarchical Condition Category (HCC) coding affects the definitions of populations of people living with dementia, the quality of care, the types of care received, and the health outcomes of those individuals.

These recommendations are in alignment with the National Plan to Address Alzheimer's Disease's Strategy 1.E (Facilitate translation of findings into medical practice and public health programs) and all Strategies under Goal 2: Enhance Care Quality and Efficiency.

Thank you for considering these comments.


S. Stimson  |  07-11-2020

Where would I go to find a complete list of tribal nursing homes through out the USA?

ANSWER:

CMS has a Tribal Nursing Home and Assisted Living Facility Directory 2020 on their website at https://www.cms.gov/Outreach-and-Education/American-Indian-Alaska-Native/AIAN/LTSS-TA-Center/the-tribal-nursing-home-collaborative. Hope this helps.


H. Olds  |  07-9-2020

I was viewing the website for the trainings and was wondering if CEU's are going to be offered for these courses?


J. Shook  |  07-08-2020

My mom is in early stage dementia.


M. Ellenbogen  |  07-07-2020

Attached is my speech for the NAPA meeting. There is nothing wrong with the format as this is what I need to do in order to read it. It would be great if you can leave it that way so others can see what I must do to continue to be able to function as it may help another person with dementia who also has trouble reading any more.

Please let me know the next steps or if I need to do anything else. I may also add to my comments once I see the agenda and hear the discussion for that day.

ATTACHMENT:

My name is Michael Ellenbogen.          Some of you          may remember me          as I live with dementia;          but I am living life to the fullest          and making huge changes          in how people with dementia          should be treated,          wherever they live.         Although my request to speak          over the internet          for so many years was originally denied          a higher-level power          ensured that I had my chance to be heard here today          and I now understand          that all of those with dementia          can now be heard         no matter where they are in the US.          I remember          about 5-6 years ago          when I stood on the floor          and insisted you include people with dementia          as part of the process.          To my surprise          you rose to the top           and did exactly that          the following year.         For that I am extremely grateful.

I now want to commend you          for taking this action of listening to them         over the internet          which will make everyone          so much more knowledgable          as they are the true experts          when it comes to knowing what itsreally like  to live with this disease          and what it truly needs to improve our lives. 

But we still need a little more tweaking.          As part of this program,          you need to add one more person          living with dementia          to the NAPA board.         I have done this for a very long time          and it is my time to move on.          I do hope          that others will step up to the plate          and take over          where I left off.          So much more needs to be done;          but it will only happen          if others          with dementia         continue to fight          for our civil rights          and be heard         and included in the process          of all decisions being made.

It is important          for them to also understand         things do not happen by just saying it          once or twice.          But we must continue to repeat it          as many times as necessary          until it finally becomes part of the process.          I personally know         it is not easy          but we can not give up          as some things have taken 5 years          to finally happen.         Don'tbecome discouraged          if you are not successful;          but think outside the box          for a new method         to get your points across.

Thank you again          as we continue to make progress towards         "Nothing About Us Without Us".

P.S.         I would also like to thank          Arnold & Porter law firm          for standing up for all those          with dementia because if it were not for their assistance          our voices would have been kept silent.

WHEN ASKED IF HE WOULD LIKE TO UPDATE HIS COMMENTS:

Thanks so much for the opportunity to update but I have no Idea on what I sad because I only though about it an hour before my speech and I had no notes. I tend to live in the moment. Please use what you already have. Hope you show it the way I sent it in and let other know why I do that. Even that is becoming hard for me to read as I was really struggling this time. Butit worked great for about 8-10 year. Reading and writing is really become a big issue. Even following TV as the way people speak it'stoo fast to possess. Have a great day


JUNE 2020 COMMENTS

L. Gerdner  |  06-25-2020

We have corresponded before on my work with Individualized Music in persons with Dementia. I am hoping we might be able to collaborate on an extension of that work. Attached are two documents. Attached are two documents to explain further. I hope if you are interested, we might be able to discuss further with my colleagues.

ATTACHMENT 1:

We have corresponded previously and you have helped to distribute information on the Evidence-Based Protocol: Individualized Music for Person with Dementia. I would like to share a new opportunity to further collaborate with members of the Advisory Council that makes this intervention even easier to use.

I'm so excited to tell you about a new project with which I've recently become involved. The project involves the theory-driven intervention of Individualized music.

Last year I was approached by two gentlemen, David and Ethan Alpert (first cousins), who had it in mind to 'digitize' my protocol for individualized music as an intervention for agitation in persons with dementia. Since then, after quite a few phone calls and sharing of information with David and Ethan, I have agreed to become an principal advisor to, and director of, the company they founded: 'reMindA.I. -- Music Therapeutics'.

Briefly, our objective is to enable my evidence-based guideline to be capable of reaching far more effected seniors than might otherwise benefit from the original 'analog' protocol (that is, to scale, in the current vernacular) and, perhaps equally important in this perilous time for seniors, to permit the intervention to be conducted remotely -- without requiring the face-to-face contact with family members, nursing professionals and other caregivers, that would normally attend its implementation.

The application, currently under development, curates individualized music playlists in a manner consistent with my protocol, and delivers the resulting selections to a listening device specifically designed for use both by seniors with mild cognitive impairment, as well as those who may be otherwise unimpaired but who, unfortunately, suffer the effects of agitation, anxiety, and feelings of isolation all too often associated with aging.

Given the ambitious scope of this project, we feel strongly that it both requires and deserves as much expert guidance as we can assemble from the best minds in the field. Having gotten to know David and Ethan well during these past six months, I am confident that they share my firm resolve to ensure that it is properly developed and tested -- and, accordingly, I have agreed to do my utmost to facilitate that outcome.

To this end, I am reaching out to friends and colleagues like you, whom I know can add tremendous value to the development, iteration and trial of the product, in the hope that you might be willing to learn more about the solution, comment on its features and design, and provide us with any feedback that you feel will help us create a final product of which we can all be very proud.

Should you be kind enough to participate in this exciting project with us, I will have Ethan and David send you their non-disclosure agreement for review, after which they will provide you with more detailed information.

I would be so grateful for any input you are able to provide.

ATTACHMENT 2:

reMindA.I. Business Model Summary flyer.

S. Stimson  |  06-04-2020

Any way to let people know about the attached flyer?

ATTACHMENT:

Montessori Principles for Leadership and Staff Engagement flyer.

MAY 2020 COMMENTS

J. Kline  |  05-30-2020

Caring for elderly loved one.


C. Zometa  |  05-20-2020

I am working on a project that will look at how COVID 19 is affecting Latinos in the area of Alzheimer's. Do you know of organizations that work with the Latino population in the area of Alzheimer's?

I came across Jason Resendez from US against Alzheimer's.

ANSWER:

I have forwarded your email to the Council, who could best point you in the right direction. If you haven't received a reply by next week, please let me know.

In the meantime, the October 2016 Advisory Council meeting discussed racial and ethnic disparities. Check the panelist bios at https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services-meetings#Oct2016 and you might find someone there.


APRIL 2020 COMMENTS

J. Agyenim-Boateng  |  04-14-2020

I am a graduate student studying Gerontology at Georgia State University. I am writing this email today because I have attached a letter that I would like to be made available to either of the Co-Chair of the Advisory Council on Alzheimer's Research, Care, and Services (Madam Katie Brandt & Dr. Allen Levey. This letter has some recommendations, and I hope to get some feedback very soon.

ATTACHMENT:

Recommendations to increase rates of Individual Awareness on Dementia Diagnosis.

I am a graduate student studying Gerontology at Georgia State University. I would like to make a few recommendations to the Advisory Council on Alzheimer's Research, Care, and Services on how to increase individual awareness on Dementia. According to an Issue brief released in January 2020 by the ASPE, personal knowledge on Dementia is very low as such people are not failing to report when asked about the Dementia status. Individual awareness is essential because it affects caregiving, healthcare, and family support. Apart from the fear of stigmatization for reporting Dementia status, individuals may not be aware of their diagnosis, and physicians are not communicating clearly to them. The most affected are people with low incomes, low education, and are also of a racial or ethnic minority group.

There is a possibility physicians may have inadequate skills and training to communicate a dementia to this vulnerable group.

My first recommendation will be to advise for the introduction of is Dementia education for healthcare providers, especially physicians, which will be focused on Dementia diagnosis communication and reporting to social minorities and those of low social class.

My second recommendation to the Council is to advise for the increment of funding on educational programs so that more people get the opportunity to partake in it. This could also be achieved by forming a partnership with the WHO to fund and support the education programs.

I hope my recommendations will be discussed at your next meeting. I look forward to your reply soon.


K. Slocum  |  04-06-2020

We just wanted to express our gratitude for the Dementia Care Summit and for all the work that is being done.

Our memory care and assisted living facility in Washington (https://www.magnoliawa.com/) is so passionate about finding resources for our home and our residents.

I hope we can be in attendance sometime in the future!


FEBRUARY 2020 COMMENTS

B. Bauer  |  02-28-2020

Please find the subject input attached.

ATTACHMENT:

https://alzheimersabcs.com/

Shared Alzheimer's Disease information for anyone motivated to learn

ALZHEIMER'S DISEASE OBSTACLES

Do AD obstacles shape realism and hope? Can Alzheimer's Disease be Cured? Can Alzheimer's Disease be Prevented and/or Delayed? Why have so many trials failed over the past two decades? What are the obstacles? These are all questions that have sensitivity associated with them and realistic expectations may be viewed as being negative.

Realism and Hope

Bruce's realism: --> Alzheimer's Disease (AD) causes the death of neurons in the brain. With an overproduction of the Amyloid Precursor Protein (APP), amyloid peptides along with fragments are produced. Amyloid plaque is formed in responses to inflammation. Aggregates accumulate over many years (assume 10)to an unknown level where an unknown mechanism triggers fibrils and tangles in the Tau Protein. Fibrils and tangles are followed by the death of neurons, thereby beginning Alzheimer's Disease. Bruce's Hope:--> Implement Bruce's Prevention Hypothesis https://alzheimersabcs.com/2019/01/04/510/ by approving Solanezumab, Aducanumab, and Gantenerumab to treat amyloid accumulation during the assume 10 years of accumulation. In parallel perform basic research to identify an effective intervention to delay and/or halt neuron loss through preventing the amyloid trigger mechanism (currently unknown) of Tau Pathology.

Can Alzheimer's Disease be Cured

Alzheimer's disease cannot be cured today. Cure means correcting damage and returning to a normal state. At the symptomatic cognitive impairment stage of AD there is too much neuron damage to return to a normal state. However, with new knowledge and new technology, it might be possible in the future to develop a bypass implant that could replace damaged portions of the brain, such as the Entorhinal Cortex. Such knowledge and technology may take centuries.

Can Alzheimer's Disease be Prevented or Delayed?

Alzheimer's disease may possibly be prevented and delayed. Prevention takes intervening before neuron damage occurs in the Entorhinal Cortex (EC). Neuron loss is believed to start possibly 10 years before cognitive impairment is diagnosed as Mild Cognitive Impairment (MCI). Neuron loss is belief to start in theTtransentorhinal and Entorinal cortices.

Delaying AD is more of a challenge, as delay means to slow or stop disease progression, either before or after the disease has started and neurons have been lost. This optimally would be in the presymptomatic Prodromal AD stage, and possibly during the cognitive symptomatic MCI stage. Either period has challenging obstacles that involve the brain's immune system along with the varied forms of the Tau protein.

Recent basic research has reported encouraging Tau protective findings involving the ApoE gene. First was two ApoE 2 allele prevented AD. Second was a single nucleotide change in the DNA also appears to have delayed the disease. However, both had negative consequences on Cholesterol and heart issues.

Therefore, the issues are: a) What is the amount of neuron damage? b) What is the presymptomatic efficacy requirement for an intervention? c) What is the insurance coverage (before & after Medicare eligibility)

Why have clinical trials failed?

Three hypothesize obstacles may explain these AD trial failures: (a) Targeting the wrong pathophysiology mechanisms (proteins, peptides, etc.); (b) The drugs do not engage the intended targets; and (c) The drugs are hitting the right targets but are doing so at the wrong stage of the disease". (Reisa A Sperling et. al. Nov. 2011).

Bruce's reasons for Clinical Trial failure

  1. The wrong Stage of the Disease -- Patients selection criteria of Mild & Moderate Alzheimer's Disease (AD) had too much neuron damage to demonstrate the FDA efficacy requirement (Meaningful Cognitive Benefit) to attain market approval.

  2. Possible right drug & target, but wrong stage. Monoclonal Antibodies (MABs) demonstrated dissolving and removing amyloid but too late in the disease process. These drugs and the amyloid target have to be before neuron loss begins to be effective.

  3. FDA Market Requirement -- Meaningful cognitive benefits requirement is not possible once amyloid aggregates accumulation triggers neurons loss via Tau fibrils & tangles. There is no existing evidence to indicate that new neurons can be created.

What are the obstacles?

Bruce views the obstacles as "Disease Oriented", and "Stakeholder Oriented" as follows:

Disease Oriented Obstacles

  1. Biological biomarkers: Non-invasive, cost effective biological biomarker (Blood, neurofilament protein) are needed for Asymptomatic Prevention and Prodromal AD delay stages.
  2. ApoE Allele 2,3,and 4 role in Tau pathology along with possibility of genetic engineering changes to an allele currently lack basic research knowledge.
  3. Brain's immune system's role: Additional knowledge and understanding needed for delaying or halting AD during Prodromal stage once Tau fibrils and tangles start.
  4. Tau protein's isoforms: Additional knowledge and understanding of their role relative to AD, Supranuclear Palsy, and Frontotemporal Dementia.
  5. Tau Hyper-phosphorylation: Additional knowledge and understanding is needed relative to fibrils and tangles.
  6. Rate of neuron damage: needed for determining an efficacy criteria for delaying the disease process during the Prodromal AD stage.
  7. Rate of amyloid aggregate accumulation: Needed for Asymptomatic intervention efficacy, along with the trigger point causing Tau fibrils and tangles to begin.
  8. The amyloid accumulation mechanism that trigger Tau fibrils and tangles would be a significant finding.

Stakeholder Oriented Obstacles

  1. Awareness and understanding of AD by caregiver, patient & the general population.
  2. Leadership, who appear driven by psychiatry educated medical methods and guide research from their past experience of treating cognitive impairment symptoms as opposed to addressing Biological causes for neuron loss.
  3. FDA market requirement -- (Meaningful Cognitive Benefit) -- is not appropriate for presymptomatic patient with no cognitive symptoms.
  4. Government's Health and Human Services Structure: A Separate Agency is needed like NASA. Centers and Research Laboratories outside of Washington should focus on a segment of the overall Alzheimer's Disease and Related Dementia mental disorders. Patient Care should be a separate Center.
  5. Pharmaceuticals incentives balanced to risks are needed.

Conclusions

Bruce's strategic prioritization would be Asymptomatic stage to remove amyloid, prevent aggregate accumulation and initiate prevention for future candidates. Second would Prodromal AD and the many Tau protein issues. In parallel conduct basic research for Tau Protection and stopping Tauopathy. Finally, Symptomatic AD care needs realistic communication. Patient Care for symptomatic AD before the inability to sustain Activities of Daily Living (ADL) is a manageable lifestyle. The inability to sustain ADL is the trigger point to caregiver issues that need focus, support, and creative approaches.


JANUARY 2020 COMMENTS

M. Hogan  |  01-24-2020

Good morning. Thanks to Helen for taking time to read my brief comments. I had hoped to be in attendance for this first meeting in 2020, a new decade, to support my dear friend Jane as she spoke to you today. I had hope, too, to be present to thank Dr. Levey for reminding me of the importance of a worldview that would include a "glass half full" and for helping me connect with those involved in the development of the Savvy Caregiver Training and subsequent recent research on the Savvy Tele-health model that was presented to the Council in January 2019.

Jane's story of her sister Ellen is a very poignant journey and reinforces the challenges experienced by many individuals with intellectual disabilities and their families. Last year Jane presented at the NDSS Adult Summit along with a Medical Ethicist. Collectively they conveyed the importance of maintaining quality of life until the end of life for one and all and of the importance of the medical pledge to do no harm as people face end of life challenges.

2020 is a number that my brother Bill would have embraced wholeheartedly. He was a man who loved dates and calendars and kept daily a fastidious health record on his calendar for years.

2020 would have been the year of Bill's 60th birthday. I often wonder how he would have aged and what wisdom he would have imparted as they years went by. I wonder too, if he would have continued to love Julia Robert and maintained his alias, Harrison Ford, as he traveled by plane independently and introduced himself to the flight crew using his alias!

Bill died on February 25th, 2010 of complications of Alzheimer's disease. He was 49 years old. I will forever remain haunted by his end of life experience. Nonetheless, as I reflect on these 10 years since his departure I am reminded that the "glass is, indeed, half full".

In this time span I have been gifted with the opportunity to meet and work with many incredible people that I would not have met, had it not been for my brother Bill. This includes so many families from across the globe, each with their own compelling stories of love, commitment and life long challenges. Some of you who have been at this table for many years will recall such heart wrenching stories laden with challenges that I related to you...like Betty, Frank and Richard.

For the past several years I have been given the opportunity to come to this table and give voice to the special issues that people with Down syndrome and other intellectual disabilities and their families' experience. I am grateful that some of you have been able to relate to these unique issues encountered by a unique population, a population that can enable each of us to reflect on life's meaning on compassion, kindness, equality and inclusiveness.

I believe that Bill left behind what I consider divine energy. He helped me step out of my comfort zone and speak, often and adamantly about people that are often forgotten and voiceless. He helped me impart his loving healthy perspective as I attempted to convey what is needed to by so many with intellectual disabilities as they age and face the challenges of AD or other dementia. He challenged me to think about who is really disabled, is it those with the label or is it those of us with limited vision who cannot see what each of us has the capacity to contribute in life.

In 10 years time many things have been accomplished...added research dollars, inclusion in the National Plan, dollars spent on training, increased dialogue about this special population along with new voices and faces who can continue as engaged advocates for those who often cannot voice their own needs. In the next 10 years may we have the wisdom, capacity and the ability to recognize the necessity to continue our efforts on behalf of this very important group of people.

For these things I am grateful.


J. Boyle  |  01-22-2020

I am from Sea Girt, NJ.

I was sister, legal guardian, primary caregiver, housemate, and sidekick for my sister Ellen Boyle, a woman with Down syndrome. We lived together. She died at home on hospice from end stage Alzheimer's Disease at age 52 in 2018.

When she was born in 1965, our family was told her life expectancy would be into her 20s. She lived at home her entire life graduating from high school at age 21, worked for 20 years and then attended day programs. She was extremely active in special olympics, social, civic and church activities. She was well known in the community and was beloved. She exceeded so many expectations, but at age 50 was diagnosed with Alzheimer's, something we never imagined. This marked start of a steady and fast decline that resulted in her death just two years later.

We now know that those with trisomy 21--Down syndrome--are at very high risk for Alzheimer's/Dementia and for many signs become evident in their 40s and 50s.

Alzheimer's caused changes in Ellen that were baffling to understand, painful to watch, and extremely difficult to adapt to. But it was equally challenging to access the information and the resources needed to navigate the disease process, to preserve a quality of life, ensure comfort, and ultimately support a peaceful death. Her accurate diagnosis was as devastating as it was difficult to obtain. We encountered the reality that at the time there was less understanding of Alzheimer's in persons with Down Syndrome.

At the urging of the National Task Group on Dementia on I/DD, in New Jersey we have begun a Family Support Group for Down syndrome and Alzheimers/Dementia. In just one year, 40 families have joined us seeking support, information and resources. As word spreads, we hear from more families each month. Sadly we had 4 deaths this past year.

On behalf of those aging with Down syndrome and their families and caregivers, please be aware of the significant impact of Alzheimer's Disease on those with Down syndrome and consider their special needs in your work.


D. Ervin  |  01-22-2020

I am the Chief Executive Officer for Jewish Foundation for Group Homes, a Montgomery County, MD-based provider of community living supports to adults with developmental disabilities. I began my career in this particular field in 1987, and have watched both the systems of services and supports, as well as the philosophies that inform them, change in overlapping ways over the ensuing 32 years.

At the turn of the 20th Century, the average lifespan of a person born with a developmental disability was 19 years. By the turn of the 21st Century, the average lifespan had grown to 66 years. Advancing science and medical technology has had a profound and lasting impact on lifespan, and people with developmental disabilities are living longer than at any point in human history. We rightly celebrate longer, fuller lives for people with developmental disabilities--my organization, JFGH supports a woman who is 92. She is, by virtually any standard, a miracle.

At the same time, people with developmental disabilities living longer brings challenges to systems of long term supports and services and healthcare systems, to name but two, for which we are inadequately prepared and resourced. More specifically, Medicaid-financed systems of supports for Americans with developmental disabilities are ill-prepared to support people who are experiencing forms of early-onset dementia and Alzheimer's disease; and, while Home and Community Based Service (i.e., Medicaid waiver) programs have proliferated across the US since the 1980s to support people in community settings, very little attention has been paid to how these programs can shift to support people with developmental disabilities as they age. Concepts that are bandied about as colloquialisms, such as ‘aging in place', for people who develop neurotypically, and models of care and support are being developed. For people with intellectual and developmental disabilities (IDD), these models of care are much slower in their development, and are broadly inaccessible.

Among the Council's membership, Dr Matthew Janicki, a recognized expert in the relationship of IDD to dementia and dementia care, and a small band of his colleagues, have informed the research literature as to approaches to supporting people with IDD and dementia in community settings. And, there is enough in the literature to create a body of best practice for community-based organizations like JFGH. However, the public funding that pays for community-based supports is not aligned with those best practices at best, and at worst, is simply insufficient to provide any meaningful care that is tailored to the needs of people with IDD receiving Medicaid waiver supports who are experiencing dementia.

As an example, JFGH supports a gentleman--"John"--with Down syndrome who is 61 years old. As you all perhaps know, people with Down syndrome experience early onset dementia and Alzheimer's disease at a disproportionally higher rate than their neurotypically developing peers. To some extent, John was a bit atypical to the extent that he lived well into his 50s without experiencing any signs of dementia. Three years ago, John's life changed radically and seemingly overnight. Signs of advancing dementia, subtle at first, because substantial. In an exceptionally short period of time, John lost basic skills in activities of daily living, including his abilities to feed himself, use the bathroom independently, and even ambulate independently about his environment. More substantial than these losses was the radical change to his personality. A once gregarious, fun loving friend and colleague to many stopped speaking, interacting socially, making eye contact, and the host of other personality traits that had once earned him the nickname "Disco John."

As the direct support and other staff at JFGH watched this process, we were unprepared as an organization to support the staff's process of adjusting to John's fast-evolving support needs, as well as how to support staff emotionally as they experienced John's loss of connection to them. While staff aren't--and arguably should not be--family, they experienced John's loss of capabilities every bit like a family member might.

As JFGH grapples with fitting John into a service system that is not equipped and resourced to support his needs, we are left to grapple with the potential of simply discharging his from our care as "medically complex," knowing that he would live out his days in a nursing home, a strange and unpredictable environment at which John will never be "home."

In JFGH's community living supports, 40% of the people we currently serve are aged 40 years or more. These are people for whom supports must evolve to both acknowledge the aging process, the onset of dementia that is likely, and how best to support them where and how they age. Dr Janicki and others have provided a support framework designed to deliver quality outcomes for people with IDD and dementia--we have a good idea of what to do.

What we don't have is the means with which to do it.

My call to action to you today is several fold.

To whatever extent the Council can, I urge you to consider taking a specific position(s) that:

  1. Advances a wider, intentional dialogue on practical solutions that are culturally appropriate and accessible to people with intellectual and developmental disabilities who are experiencing dementia;
  2. Advocates for resources being explicitly dedicated to the support needs of people with intellectual and developmental disabilities who are experiencing dementia--from research funding to specialized services and supports (through, for example, demonstration waivers) that are fully funded; and,
  3. Informs the development of a set of universal support standards to address the care needs of people with IDD and dementia that can be used to assess system ‘readiness' to support the aging population of people with IDD.

In full disclosure, those of us in the field of long term supports and services for people with IDD have made an art form of "admiring the problem."

In 2002, then-16th United States Surgeon General, Dr David Satcher, issued a report in which he lamented the lack of access to quality healthcare for people with IDD that could deliver an improved health status and better health outcomes. Eighteen years later, progress has been glacial.

In 2013, Dr Janicki and colleagues published Guidelines for Structuring Community Care and Supports for People with Intellectual Disabilities Affected by Dementia.

And, in 2020, organizations like JFGH, largely funded through Medicaid waivers, continue to grapple with how best to support people like John with funding that is inflexible and simply doesn't contemplate shifts in supports needed to allow John to age in place, to be supported through his journey, to be surrounded by the people most committed to the quality of his life.

The Guidelines are developed, JFGH and countless other agencies like ours are ready to implement and test them, to amass data that inform the evolution of best--and actually evidence-based--practices, and to support people with IDD as they age in place in their homes and their communities. To any extent the Council can push this agenda, you have a willing partner in JFGH, and I stand at your beckon call.


M. Sharp  |  01-22-2020

I am the Program Manager for The Association for Frontotemporal Degeneration. I appreciate this opportunity to offer comments from AFTD.

This morning's presentations on the epidemiology of dementia were excellent. As you may know, the epidemiology of FTD disorders remains largely unknown. Even basic facts such as the prevalence and incidence of FTD are uncertain. AFTD's estimate of 60 thousands cases in the US is based on a combination of sources and covers all the clinical diagnoses that fall under the umbrella of frontotemporal degeneration. This includes Progressive supranuclear palsy, corticobasal degeneration, all types of primary progressive aphasia, as well as behavioral variant FTD.

Sixty thousand cases is probably an underestimate, considering how often FTD is misdiagnosed. Adding to the challenge is that FTD is probably not a single disease and is associated with several different pathologies, most notably the proteins tau and TDP-43, and a handful of genes including C9orf72 which overlaps with ALS. Until this complex puzzle of pathologies and overlapping clinical syndromes is sorted out, large-scale epidemiological studies will be untenable.

The key to this puzzle are biomarkers. This is reflected in the research recommendations generated by the 2019 ADRD research summits, where the term biomarker is used 48 times. In FTD, developing biomarkers for diagnosis, prediction and disease monitoring in the next 2-7 years is a top priority. In response to the critical importance of biomarkers, AFTD launched the FTD biomarkers initiative. Since 2016 AFTD has awarded 13 grants to develop a variety of FTD imaging tests and fluid biomarkers for clinical trials and diagnosis. There are more details about current and past biomarkers project on AFTD's website and most studies are included in the NIA's IADRP database.

If you are interested in more information AFTD Biomarker Initiative or any of the other research funded by AFTD please do not hesitate to reach to me or any of AFTD's research staff.


P. D'Antonio  |  01-22-2020

Good afternoon and thank you for your time today. I am Vice President of Professional Affairs for The Gerontological Society of America (GSA). GSA honors aging across the lifespan and is the oldest and largest interdisciplinary organization devoted to research, education, and practice in the field of aging. GSA's principal mission--and that of our 5,500 members--is to promote the study of aging and disseminate information to scientists, practitioners, decision makers, and the public. A large segment of our membership is devoted to clinical practice and research on Alzheimer's Disease and Related Dementias and some of our members are current or past members of the Council.

As we wait for a cure to emerge, how can we better support persons with dementia and their care partners?

On behalf of GSA, I'd like to highlight one promising area: improved recognition and management of neuropsychiatric symptoms associated with dementia.

Evidence suggests that persons with neuropsychiatric symptoms - or NPS - experience worse outcomes than those without NPS. These outcomes include greater impairment in activities of daily living, earlier institutionalization, and accelerated mortality.

Among the various NPS, dementia-related psychosis includes delusions (false beliefs) and hallucinations (seeing or hearing things that others do not see or hear). These symptoms can be frequent, severe, persistent, and distressing to persons with dementia and their care partners.

Dementia-related psychosis is distinct from psychosis experienced by individuals with schizophrenia and other psychiatric illness, and it can be highly stigmatizing for persons with dementia. Dementia-related psychosis is also one of the factors that may lead families and care providers to seek long-term care placement for their loved ones with dementia.

In August 2019, GSA published a report "Dementia Related Psychosis: Gaps and Opportunities for Improving Quality of Care." The report was developed in collaboration with experts in geriatrics, psychiatry, neurology, pharmacy and nursing. In it, we summarize best practices and propose several improvements to advancing quality of care that we hope will be widely read and implemented.

Three key recommendations are:

  1. Providers need better ways to document a diagnosis of dementia-related psychosis so they can develop appropriate care plans.
  2. Care teams need more training and resources, so they may proactively communicate with persons with dementia and their care partners about symptom progression and how to cope.
  3. More research is needed to support evidence-based strategies for treatment.

We invite the Council Members to review our full report on the GSA website (https://www.geron.org/programs-services/alliances-and-multi-stakeholder-collaborations/dementia-related-psychosis).

Thank you for your dedication and service on the Council and to people living with dementia and their care partners.


A. Taylor  |  01-22-2020

Thank you for another opportunity to provide public comment to the Advisory Council.

In November, I had the pleasure of attending the Neurological Conditions Surveillance Summit, which was an all-day event for national leaders and stakeholder organizations in neurological disorders. The event was organized by Association of State and Territorial Health Officials (ASTHO) and hosted at the Centers for Disease Control and Prevention (CDC) Headquarters in Atlanta, GA.

The following introduction was included in the event materials:

"As a part of the 21st Century Cures Act, Congress authorized the Centers for Disease Control and Prevention (CDC) to develop a National Neurological Conditions Surveillance System (NNCSS) that provides useful estimates of neurological conditions in the United States. CDC will use existing data and emerging tools to create efficient, reusable processes and models that can be applied to multiple conditions to provide disease-specific surveillance information."

In the first half of the day, attendees learned about the NNCSS, the advocacy efforts behind its origins, funding details, and the progress made in developing and pilot testing in two initial disorders--multiple sclerosis and Parkinson's disease. Presentations included descriptions of 3 stages of the initial project plan starting in FY2019 and continuing beyond FY2022, pending further funding.

During the afternoon, attendees participated in small group discussions to brainstorm potential criteria that might be considered for the selection of the next several diseases to be added into the NCSS as early as FY2022. Representatives of each small group then presented a summary of their group's suggestions. Based on the composition of each small group, the recommendations varied widely from the perspectives of rare disorders to very common disorders.

I bring this initiative to the attention of the Advisory Council for several reasons.

First, this is a project of direct relevance to AD/ADRD and as such may be a topic of interest for a future council meeting. While quite a bit is known about the incidence and prevalence of Alzheimer's disease, there is insufficient data on Alzheimer's disease-related dementias. The NNCSS appears to be an important resource for narrowing that informational gap.

Next, during the event attendees learned that initial funding for the NNCSS presents budgetary limitations for dedicated project management and neurology staff assigned to the project. As such, the NNCSS presents an opportunity for the sub-committees to consider funding recommendations.

Lastly, the addition of future disorders to the NNCSS database will also require the involvement of patient advocacy organizations and disease experts. The Advisory Council on Alzheimer's Research, Care and Services serves as an important intersection between federal agencies and a variety of dementia stakeholder types. I see an advocacy opportunity to collaborate on messaging to the CDC about including dementia in its next round of diseases to be added to the database.

I hope these comments will be useful to the Advisory Council and the dementia stakeholders both in the room and watching remotely.

With continued respect and admiration for the work of the Advisory Council on Alzheimer's' Research, Care and Services.


G. Epstein-Lubow  |  01-21-2020

I am a geriatric psychiatrist at Butler Hospital and Associate Professor at Brown University. I prepared these public comments with the Professor of Medicine and Chief of the Division of Geriatrics at UCLA. These comments are our own.

The Assistant Secretary for Planning and Evaluation (ASPE) and this Advisory Council must address payment reform for dementia care and treatments. There are at least six working models in the US for dementia care which improve quality, achieve better clinical outcomes for persons living with dementia and caregivers, and lower costs; but, care from these models is not widely available.

ASPE should be aware that on Nov 7, 2019 a one-day meeting called "The Payment Models for Comprehensive Dementia Care" conference convened over fifty clinicians, researchers, advocates, payers and other leaders with expertise in dementia care and healthcare payment. Conference goals were to review short-term solutions for payment reform and describe next steps to accelerate use of current and new payment models. The conference was held in Washington D.C. with support from The John A. Hartford Foundation and Hebrew SeniorLife. Conference outcomes will be published this year.

Meanwhile, HHS should act now to advance payment reform efforts through three activities:

  1. Continue work previously conducted by ASPE regarding Examining Models of Dementia Care;
  2. Convene at least one work group to address payment reform for comprehensive dementia care; and,
  3. Begin immediately to monitor how the inclusion of dementia as a risk adjustment modifier in the CMS Heirarchical Condition Category (HCC) coding affects the definitions of populations of people living with dementia, the quality of care, the types of care received, and the health outcomes of those individuals.

These recommendations are in alignment with the National Plan to Address Alzheimer's Disease's Strategy 1.E (Facilitate translation of findings into medical practice and public health programs) and all Strategies under Goal 2: Enhance Care Quality and Efficiency.


M. Murphy  |  01-19-2020

I am 46 years old and I have Down Syndrome. I live in New Jersey with my parents. I graduated from high school and I have worked at Banana Republic for 15 years. I take watercolor and dancing lessons. I love to do things with my friends.

I grew up with a very close group of friends and we all have Down Syndrome. We have been together since the 1980's. There were eight of us and we all enjoyed Special Olympics, bowling, dances and parties. Four of my eight friends have died from Alzheimer's Disease in their early 50's. They are Tricia, Judith, Danny and Craig.

None of us knew this would happen to us and our families. People who have Down Syndrome get Alzheimer's Disease very early.

I am afraid for what the future holds for me and my family. Please include us in the programs you develop.

Thank you for your attention.


L. Murphy  |  01-19-2020

My daughter is also providing written testimony today. When she was born with Down Syndrome in 1973, my husband and I were told that she would live to be 40. None of the medical experts knew much more than that at the time. No one anticipated the ravages of Alzheimer's Disease that were coming our way.

As parents we kept our children home. We started Early Intervention and Pre-School programs for them. We fought to have them integrated into school systems and to be provided transportation. We advocated for job training so they could be productive citizens. We created Transitional Services from the school system to the work force.

The "Good News' is people with Down Syndrome are living longer than ever. The "Bad News" is there are no services for them as they age prematurely and develop Alzheimer's Disease. As parents we have been advocating for them their whole lives.

I helped start a Caregiver Support Group in New Jersey for families who are caring for a loved one who has Down Syndrome and Alzheimer's Disease. We started the group in January 2019 and we have been overwhelmed by families who have reached out to us. At this time we have 40 members. We meet monthly in person or participants can also join by phone or computer. These families kept their loved ones home and are now facing a very cruel end to the efforts, love and support they have already given.

Please keep those who have Down Syndrome who are aging in your future plans and services.


D. Yobs  |  01-03-2020

On behalf of patients and families who have been affected by the always-fatal diagnosis of Prion Disease and who are desperately hoping for new discoveries and a cure, we ask for assistance in gaining recognition of Prion Disease as a "Related Dementia" wherever ADRDs are defined.

CJD (Creutzfeldt-Jakob Disease) is a rapidly progressive dementia caused by prions, normal proteins that misfold in the brain and cause disease, much like a-beta and tau in Alzheimer's Disease and Frontotemporal Dementia, and alpha-synuclein in Lewy Body Dementia. Advances in the field of Prion Disease directly led to the discovery of protein mechanisms, which is currently being exploited to improve diagnosis and develop treatment targets through protein amplification assays like real-time quaking induced conversion (RT-QuIC). Further discoveries about Prion Diseases would be equally applicable to other ADRDs.

Prion Disease/CJD parallels AD in many ways, including the disease mechanism, treatment targets, symptoms, patient experience, and caregiving experience.

Diagnostics and breakthroughs discovered for one protein misfolding disease will continue to assist the others. Prion Diseases naturally occur in animals and are transmissible, which makes Prion Disease the protein misfolding disease with the most valid animal models for research.

To exclude CJD/Prion Disease from "Related Dementias" does not serve patients, caregivers, doctors and scientists. Excluding Prion Disease from the ADRD label prevents valuable research that would improve the ADRD field. We respectfully ask for your assistance in recognizing Prion Disease/CJD as part of the Alzheimer's Disease and Related Dementias group.


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2019 Comments

NOVEMBER 2019 COMMENTS

C. Wilson  |  11-13-2019

Would it be possible to receive notice of NAPA Advisory Council Meetings? I am wondering if they are web casted so I could attend?

ANSWER:

Thanks for requesting to be put on the NAPA Listserv; Advisory Council meetings, publications, and information given to us from member agencies are sent out as information is received. You will get a system confirmation as soon as I have your name added.

Meetings are streamed live to view, and that link is included on the meeting announcement. Council members, or those attending for them, and speakers are given a call-in number so they can participate remotely if necessary.


L. Gitlin  |  11-01-2019

Wanted to let you know that Renee Chenault has a new video that the Council may benefit from seeing and having her talk and show her video if she would.

This youtube explains it a bit -- https://www.youtube.com/watch?v=VK7Fvi1NCX0.


OCTOBER 2019 COMMENTS

S. Tichawonna  |  10-24-2019

The Home, a drama about a dutiful son faced with the dilemma of whether or not to place his mother in a nursing home when she shows signs of dementia. Sowande Tichawonna, who was on the NAPA Advisory Council, is in the cast. Thanks for spreading the word!

Matinee: https://protect2.fireeye.com/url?k=bb080eca-e75c17b6-bb083ff5-0cc47adc5fa2-ed95f2d5e470b89d&u=https://protect2.fireeye.com/url?k=a1cad61b-fd9fdf08-a1cae724-0cc47adb5650-7469419d1c8fdfd9&u=https://www.tix.com/m/Event.aspx?EventCode=1154920

Evening: https://protect2.fireeye.com/url?k=09b1ad7a-55e5b406-09b19c45-0cc47adc5fa2-78dc82d36713f885&u=https://protect2.fireeye.com/url?k=185948be-440c41ad-18597981-0cc47adb5650-dc5fa1a0e9bb29a9&u=https://www.tix.com/m/Event.aspx?EventCode=1154925

Photo of Play Billboard.

E. Duncan  |  10-24-2019

Please allow me to introduce myself as one of the editorial assistants working on Mental Health at Routledge. I am just getting in touch regarding one of our books, Ethnicity and the Dementias 3rd edition, to inquire if you would be willing to place an advertisement for the book on the NAPA listserv? We would be able to send on a press release, if that would be helpful. I look forward to hearing back from you. You can view more information about the book here:

----- ----- ----- ----- -----

Ethnicity and the Dementias, 3rd Edition

In recent years, the literature on the topic of ethnic and racial issues in Alzheimer's disease and other dementias has increased dramatically. At the same time, the need for cultural competence in all of geriatric care, including dementia care, is increasingly being acknowledged. Dementia is a large societal problem affecting all communities, regardless of race or ethnicity, and understanding dementia for specific groups is tremendously important for both clinical knowledge and for health planning as a nation.

This third edition of Ethnicity and the Dementias offers invaluable background information in this area, while also examining how those suffering from dementia and their family members respond or adapt to the challenges that follow. Thoroughly updated and revised throughout, the book features contributions from leading clinicians and researchers in the field, with particular attention given to genetic and cultural factors related to dementia, effective prevention and treatment strategies, and issues in caregiving and family support. Chapters offer specific recommendations for dementia care in eleven ethnic/racial groups, as well as suggestions for working effectively with LGBTQ families.

Providing a truly comprehensive resource on ethnicity and dementia, and including reflections on emerging trends and the future of caregiving, this new edition is ideal reading for clinicians, educators, researchers, policy makers, and families, in search of the most current ethnogeriatric findings.

Publication Data:
Ethnicity and the Dementias, 3rd Edition
ISBN: 9781138062986| Paperback | 414 Pages| £35.99| September 21, 2018
Available via https://www.routledge.com/Ethnicity-and-the-Dementias-3rd-Edition/Yeo-Gerdner-Gallagher-Thompson/p/book/9781138062986
To request a copy for review, please complete our online form: https://m.email.taylorandfrancis.com/Review_copy_request

About The Author:
Gwen Yeo, PhD, was Founding Director of the Stanford Geriatric Education Center, Stanford University School of Medicine, where she helped develop the field of ethnogeriatrics. A major focus of her publications has been dementia and ethnicity.

Linda A. Gerdner PhD, RN, FAAN, is a published author and a former ethnogeriatric specialist at the Stanford Geriatric Education Center. She has visited Hmong villages in Laos and authored three books on Hmong Americans.

Dolores Gallagher-Thompson, PhD, is Professor Emerita at Stanford University School of Medicine. She is board-certified in geropsychology, specializing in treatment of late-life depression and anxiety disorders. She works with persons with dementia and family caregivers.

About Taylor & Francis Group
Taylor & Francis Group partners with researchers, scholarly societies, universities and libraries worldwide to bring knowledge to life. As one of the world's leading publishers of scholarly journals, books, ebooks and reference works our content spans all areas of Humanities, Social Sciences, Behavioural Sciences, Science, and Technology and Medicine.

From our network of offices in Oxford, New York, Philadelphia, Boca Raton, Boston, Melbourne, Singapore, Beijing, Tokyo, Stockholm, New Delhi and Johannesburg, Taylor & Francis staff provide local expertise and support to our editors, societies and authors and tailored, efficient customer service to our library colleagues.


L. Gerdner  |  10-23-2019

Are there opportunities to participate in this event. I would be interested in giving a presentation on Individualized Music for Persons with Dementia and providing information on the illustrated book for children and family entitled, "Musical Memories."

ANSWER:

Our office is not overseeing the 2020 Summit, so know less about whether they have all speakers lined up. There is more information, including Contact information, at https://www.nia.nih.gov/2020-dementia-care-summit.


D. Conger  |  10-23-2019

I am a senior at the George Washington University looking to briefly interview a policymaker or influencer on the future of policy and funding for informal caregivers that take care of patients with Alzheimer's. The focus of my paper is the enormous burden placed on close relatives or friends when a loved one is diagnosed with Alzheimer's and how future legislation may remove some of this financial, social, mental, and physical responsibility. If anyone at NAPA is available to discuss this matter briefly in the next week, or provide a contact name with someone well-informed on this subject, that would be greatly appreciated.


S. Stimson  |  10-18-2020

National Activity Professionals Week 2020 are you able to post this national contest?

ATTACHMENT #1:

International Council of Certified Dementia Practitioners and Center for Applied Research in Dementia

"Global Certification CMDCP Certified Montessori Dementia Care Professional"

Contest In Honor of National Activity Professionals Week!! January 19th -25th

Contest: Deadline for Submission January 2nd 2020

Email submissions to: iccdpcorporate@iccdp.net https://www.iccdp.net/

No phone calls please.

The winner submission will be posted in the NCCDP / ICCDP E - Publication and or any other publication or medium that ICCDP chooses.

ICCDP / CARD may use your idea in a Montessori Activity Publications and your submission becomes the property of ICCDP / CARD. Your submission will not be returned.

Cash Award: $250.00 from ICCDP and $250.00 From Center for Applied Research in Dementia.

Instructions:

Montessori type of activity design for the elderly with a diagnosis of dementia in the middle stages or late stages.

Can be any type of activity such as reminisce, pet therapy, intergenerational, crafts, family events, etc.

Must be the applicant’s original idea.

Length 45 minutes

Elder able to complete activity without any hands- on help from staff.

Submit pictures and labeled. Pictures to tell the story from start to finish

Written step by step instructions.

Name of activity.

Material / supplies needed.

Cost of program.

Purpose and Objectives.

Permission slip to use the elder’s person’s picture. Must show the elder person implementing and completing the project, step by step.

If you are selected, you will be notified by phone and or email on or before Activity Professionals Week.

Must incorporate the Dr. Cameron Camp Montessori principles.

Montessori Principles: From the book titled:

Montessori -- Based Activities for Persons with Dementia Volume 1

Author Dr. Cameron Camp PhD. Available on Amazon

  • Use real life materials that are aesthetically pleasing
  • Progress from the simple to the complex
  • Progress from the concrete to the abstract
  • Structure materials and procedures so participants will work from left to right and from top to bottom. These patterns parallel eye and head movements associated with reading in western culture.
  • Arrange materials in order from largest to smallest, and from most to least.
  • Allow learning to progress in sequence.
    Ideally, this occurs through observation, followed by recognition and then through recall or demonstration.
  • Bread down activities into component parts and practice one component at a time.
  • Ensure that participants have the physical and cognitive capability to manipulate materials and understand what is required to accomplish the task.
    It is important to minimize the risk of failure and maximize the chance of success.
  • Use as little vocalization as possible when demonstrating activities
  • Try to sit on the dominant -hand side of the participants. This makes it easier for them to receive materials handed to them.
  • Match your speed of movement to the speed of the participants when presenting activities.
    Almost always use slow and deliberate movements, especially when demonstrating an activity.
  • Make the materials and activity self-correcting.
  • Have the participants create something that can be used when ever possible. Folding paper can lead to creating figures such as those used in Origami. A melon scoop can lead to melon balls.
  • Adapt the environment to the needs of the participants.
  • Whenever possible, let the participant select the activities they will work with.
  • Accommodate for vision problems associated with aging and dementia.

Copyright protected: Do not copy without the expressed permission of Dr. Cameron Camp.

ATTACHMENT #2:

International Council of Certified Dementia Practitioners and Center for Applied Research in Dementia

National Activity Professionals Week January 19th -25th 2020

Contest Submission Form:

Use this format to type your answers. Please follow exact format in this order.

Date:

Your Name:
Credentials: (i.e., CMDCP ADC)
Position:
Name of Company:
Email:
Phone number:
Administrator’s signature required:

How long have you worked in the activities field or Therapeutic Recreation?
I understand that my submission will not be returned and becomes the property of ICCDP and CARD and may be featured in a book, article, social media, web site. Initial:

Why did you choose the Activity Professional or Therapeutic Recreation field?
One paragraph:

Name of Project:
I state that this submission is my original idea: Sign
Supplies needed:
Length of Activity:
Cost for one person:
Directions:
Purpose:
Objectives:
Length: No more than two pages.

Explain how you followed the Montessori principles.
Attach head shot of person submitting submission.
Attach pictures. Label all pictures from start to finish with names and identifying information.

When typing up your submission, follow this exact format. No pictures or submissions will be returned.
Return this form (4 pages) with your submission. Signed and dated. Initial all pages.

Email submissions to: nccdpcorporate@nccdp.org


R. Brand  |  10-17-2019

I am the president at National Council of Certified Dementia Practitioners. We are an dementia education and dementia certification organization.

In the evaluation of the dissemination of the Hand-In-Hand Dementia Training Program throughout the Veteran Community Living Centers, are the other CMS approved Alzheimer's Disease and Dementia curriculums being looked at as part of the evaluation? With the number of available curriculums, the percentage may be higher. National Council of Certified Dementia Practitioners has Certified Trainers (CADDCTs) in many veteran communities who teach the Alzheimer's Disease and Dementia Care curriculum from NCCDP. I would be interested in the knowing if this would increase the number of staff trained. Education is extremely important when dealing with Dementia and having a true picture of the percentage of staff who are educated may change how a community handles day to day life of someone with Dementia.

Thank you in advance for accepting my question.


S. DeSanti  |  10-15-2019

Thank you for the opportunity to speak about the innovations in the diagnostic pathway of Alzheimer's disease and the steps that the Centers for Medicare & Medicaid Services (CMS) is taking to provide patients, and their physicians, with new potential coverage of imaging techniques to detect the earliest stages of the disease.

Alzheimer's disease is the most common form of dementia and the sixth leading cause of death in the United States,[1] and companies, like Life Molecular Imaging, are committed to finding effective diagnostic pathways.

Life Molecular Imaging has received FDA approval for Neuraceq™, a diagnostic radiopharmaceutical indicated for Positron Emission Tomography (PET) imaging of the brain to estimate beta-amyloid neuritic plaque density in adult patients with cognitive impairment who are being evaluated for Alzheimer's disease and other causes of cognitive decline.[2]

Together with other researchers, physicians and family members, we see the future opportunity to help patients and their families and provide them with more hope.

In 2016, CMS approved a coverage project supported by the Alzheimer's Association and the American College of Radiology, known as IDEAS -- the Imaging Dementia -- Evidence for Amyloid Scanning study. This study included more than 18,000 Medicare beneficiaries over 22 months in more than 600 primarily hospital sites across the country. The first phase of the study has provided valuable evidence that beta amyloid PET imaging can change medical management in 60.2% of mild cognitive impairment patients and 63.5% of dementia patients of uncertain etiology.[3] Diagnosis changed in 35.6% of patients including an increase in diagnostic confidence and a decrease in utilization of alternative diagnostics.[4]

A second study, known as New IDEAS, which will likely require 7,000 new patients, is intended to seek more evidence from African American and Hispanic patients. As cited in a policy recommended report titled "The Costs of Alzheimer's and Other Dementia for African Americans", "[o]lder African Americans are two to three times more likely to have [Alzheimer's disease] compared to non-Hispanic whites. More than 20% of Americans with [Alzheimer's disease] are African Americans."[5]

We encourage the Advisory Council to support the effort to obtain coverage for all Medicare beneficiaries when their physician believes that the patient has early evidence of Alzheimer's disease. We need to ensure that all hospitals participate in this second study, and that they receive appropriate payment in conducting this valuable research. This will require CMS or Congress to ensure that pass through is retained just for this limited study. If hospitals do not participate in the study, patient access will be limited.

While there may be no cure for Alzheimer's disease today, symptoms are treatable. This new potential coverage undertaken by CMS will increase access to long-term services and supports that assist people with dementia and their caregivers in their home. We ask for the Advisory Council's support and again thank the Council for the opportunity to provide comments at this meeting.

NOTES:

  1. https://www.cdc.gov/features/alzheimers-disease-deaths/index.html (last visited Oct. 15, 2019).
  2. https://www.accessdata.fda.gov/drugsatfda_docs/label/2014/204677s000lbl.pdf (last visited Oct. 15, 2019).
  3. https://jamanetwork.com/journals/jama/fullarticle/2729371 (last visited Oct. 15, 2019).
  4. Id.
  5. https://www.usagainstalzheimers.org/sites/default/files/USA2_AAN_CostsReport.pdf (last visited Oct. 14, 2019).

M. Hogan  |  10-14-2019

Thank you for this opportunity to make a brief comment. My name is Mary Hogan. I have been in attendance at the many of the Advisory Council meetings since 2011 to give voice to the special challenges faced by individuals with Down syndrome, their families and other care partners. My brother Bill had Down syndrome and died of complications of Alzheimer's disease at age 49. His death occurred the day before Senator Evan Bayh introduced the Bill (2/24/2010) that would eventually lead to the passage of the National Alzheimer's Project Act early in 2011. Bill's suffering as the disease progressed was torturous and has been the reason that I have remained a presence at this forum.

I wish to extend my gratitude to the new Non-Federal Co-chairs, to Helen Lamont, the Council at large and to those new members who have agreed to serve on this body to continue the important work that I have been witness to since 2011. As you serve on your selective sub-committees, I am hopeful that you will be dedicated to changing the disease trajectory for ALL people, including those with Down Syndrome who are at significantly higher risk for developing Alzheimer's disease at a younger age. I am hopeful that you increase your awareness of the opportunities to be inclusive of ALL people as you focus on healthy brain initiatives, diagnostic challenges, access to best practices and caregiver's challenges, including financial challenges. As I have repeatedly noted, I can only hope that you will embrace the concept that quality of life until end of life is a right for ALL people with neurodegenerative diseases.

In July I distributed copies of Alzheimer's Disease and Down Syndrome Practical Guidebook for Caregivers to the Council members. I am hopeful that some, if not all of you, took time to peruse this important publication. This Guidebook was funded solely by the National Down Syndrome Society. The content is the result of collaborative efforts between the NTG and the Alzheimer's Association. Lead author, Dr. Julie Moran, member of the NTG, remains devoted to the care of those with intellectual disabilities and Alzheimer's disease and other dementias. It was an honor to serve as contributing author and a labor of love.

In light of the appointment of new Non-Federal Members, I would like to provide them with the Practical Guidebook so that they, too, can understand the unique challenges faced by those with Down Syndrome, their family members and other care partners.

I am hopeful that HHS/NIH/NIA/NICHD/CDC and the Alzheimer's Association will find ways to utilize this Guidebook for Caregivers on their websites and assist with electronic dissemination. At present it appears to be included as part of the NAPA Council website in the public comments "Notes". Additionally I look forward to the upcoming release of the IDD and Dementia Practical Strategies Guide from the National Alzheimer's and Dementia Resource Center mentioned in the documents accompanying the July 2019 NAPA Council Meeting. The availability of resources for the IDD population is long overdue. The publication related to Dementia in Indian Country shared in July was appealing and informative. I can only hope that this IDD resource is equally as appealing and equally as informative.

Though you often assume your role on the Council as a representative of a specific population or constituency, we look to you to work in the best interest of ALL individuals who face the life-ending sentence of Alzheimer's disease or other dementia. The task is daunting and your efforts greatly appreciated.


S. Stimson  |  10-11-2019

Do you have their email addresses for the professionals on the board so we can contact them?

ANSWER:

It is our policy to not give out personal contact information for the Advisory Council members. If you would like to submit a comment that I can forward to the Council, please feel free. If a Council member then wants to follow up on your comment, they can contact you directly.


N. Holloway  |  10-11-2019

Seeing that your website contains valuable information about aging/seniors, I'd love to share this latest guide that covers accurate information on substance abuse among seniors: How Addiction is Becoming a Risk for Seniors [https://www.seniorliving.org/research/substance-abuse-seniors/].

Do you think you can find a place on your webpage, at aspe.hhs.gov to share the resource guide with your community?

Thank you for your time and I look forward to hearing from you.


A. Taylor  |  10-09-2019

Thank you for the opportunity to provide public comment to the Advisory Council on Alzheimer's Research, Care and Services.

I'm here to share some important research findings about the cost of dementia care by sub-type. The study[1] was led by Dr. Katherine Possin at the University of San Francisco and supported by funding from the Global Brain Health Institute, US Dept. of Health and Human Services, Centers for Medicare and Medicaid, the National Institute on Aging and National Institute for Neurological Disorders and Stroke.

The study aim was to identify direct health care costs and utilization by people diagnosed with dementia. Researchers analyzed 100% of the 2015 Medicare fee-for-service claims data in CA. This represented claims from over 3 million beneficiaries. The average cost of care for people in CA without dementia was just over $6K in 2015. Care for those diagnosed with dementia was nearly three times higher at just under $17k.

The analysis also compared costs of individuals with specific dementia diagnosis, specifically Alzheimer's disease (AD), Lewy body dementias (LBD), vascular or frontotemporal dementia. In the crude analysis, those with LBD had the highest cost of care, at over $22K/beneficiary. LBD costs were 25% higher than the average care cost of dementia care. People diagnosed with Alzheimer's disease had the lowest healthcare cost of the 4 dementia subtypes, just under $14K.

Costs were also broken-down costs by specific services, including hospitalization, physician visits, emergency room visits, and ambulance services. People with LBD had the highest average number of physician visits, at 42 visits in 2015.

Care cost differences were largely driven by differences in hospitalization. The cost and length of hospital stays were highest for vascular dementia and LBD, each almost double the cost of AD. These higher costs were driven by more frequent visits to the emergency department and the use of ambulances. Those with LBD also had higher Medicare-funded home health costs.

Researchers then controlled for demographic, comorbid conditions and length of Medicare coverage in 2015. Those with LBD had the highest care costs, and on average were 31% than those with Alzheimer's disease.

The study revealed people with LBD had the highest proportion of the following: a history of falls, urinary issues including incontinence or infection, dehydration, depression and anxiety. LBD had the second highest proportion with delirium, delusions and sleep disorders.

Breaking LBD into the two specific diagnoses of dementia with Lewy bodies (DLB) and Parkinson's disease dementia (PDD), DLB care was about $2k more expensive in 2015 than PDD, again driven by inpatient care. While this study highlights the cost of care after a diagnosis is made, research suggests DLB is commonly missed when dementia is first diagnosed; so, the care costs may be higher.

Understanding what drives the higher care costs of LBD opens opportunities to develop and proactively deliver interventions in a home or outpatient setting. The study authors recommend programs focus on items that drive up the cost of LBD healthcare, including fall prevention, early identification and treatment of medical issues including urinary tract infections and dehydration, and attention to any sudden change in health status such as delirium, worsening psychiatric symptoms and sleep problems.

This study emphasizes recommendations made at the 2017 Dementia Care and Services Summit: the importance of developing tailored, non-pharmacological interventions for specific dementia sub-types, with the aim of improving health outcomes, reducing caregiver burden, and reducing the utilization and cost of medical care.

I hope these comments provide an even greater appreciation for the cost (pun definitely intended) of an LBD diagnosis on individuals, families and society.

I thank the Council, both federal and non-federal members, for all your continued work to advance progress on the 2025 goals of the National Alzheimer's Plan.

NOTES:

  1. Chen Y, Wilson L, Kornak J, et al. The costs of dementia subtypes to California Medicare fee-for-service, 2015. Alzheimers Dement. 2019;15:899-906.

SEPTEMBER 2019 COMMENTS

J. Lyons  |  09-18-2019

September is World Alzheimer's Month. As ardent advocates of promoting healthy aging, particularly brain health, and as professionals caring for those with Alzheimer's and related dementias, we are happy to be resources for you for any stories you may be working on, now or in the future, that deal with brain health, dementia, stroke, aging, etc. Additionally, we have enclosed some information about our book, Brain Health As You Age.


K. Henderson  |  09-02-2019

I found this article on my FB page last night. I never heard of this National Alzheimer's Project Act. I'm very interested in this my mom has Dementia she's 90 years old lives in a homecare. I have taken care of my mom for over 18 years after my father passed he had Dementia as well. Myself and brother was her POA we live in WA. St. I have taken care of mom she lived with me for 6 months but I could no longer take care of her I developed AF it was very difficult taking care of my mom myself, none of the siblings helped me while she stayed with me. I was taken off the POA I had gotten a letter from a lawyer telling me I was no longer POA. I was shocked! it was my step-sister and my sister that did this they both live in different states. I'm still caring & visiting mom taking her to all of her Doctor's appointments, shopping etc. I try numerous times contacting and e-mailing, Facebook my Governor and Representatives 4 months ago asking about the POA laws that need to be changed. My question is why are the POA (Power of Attorneys) can live in different state's. And the parent or relative lives in a different state? Who take's these family members with Alzheimer and Dementia? What if there an emergency and the Doctor need permission to help this person when both POA's lives out state. This my concern my mom is 90 years old she able to walk, use the restroom change her clothes etc. I'm still worried about what "if"? I don't know why my State Representatives or the Governor Inslee has not contacted me back? This is very important to me I need my questions answer. It's a shame your own Governor or District Representatives don't take out the time to contact you back. But they want your vote?


AUGUST 2019 COMMENTS

J. Lyons  |  08-21-2019

Today is National Senior Citizens Day. As ardent advocates of promoting healthy aging, particularly brain health, and as professionals caring for those with Alzheimer's and related dementias, we have enclosed some information about our book, Brain Health As You Age. Additionally, we are happy to be resources for you for any stories you may be working on, now or in the future, that deal with brain health, dementia, stroke, aging, etc.

Book Summary:
While we may expect to live longer, many wonder if their brains will keep up with their bodies. This book looks at typical functions and declines of an aging brain, the signs and symptoms of problems, the available treatments, the financial responsibilities, and the factors that determine what kinds of care people might need as they age.

Book Description:
Have you ever spent 10 minutes looking for your reading glasses, and they were on the top of your head? Or, have you walked into a room and forgotten why you went there? Most people, even younger ones, have had these experiences but when should such instances be something of concern? What are the normal signs of aging? Is there anything you can do to maintain your brain health as you age?

Brain Health as Your Age provides useful, achievable actions you can take to reduce your risk of brain function decline, accurate information about identifying problems, and real solutions. The authors offer useful anecdotes and scientifically validated information--important tools in separating myth from reality. The authors separate fact from fiction to ensure that recommendations are evidence-based, practical, useful, achievable, and measurable.

Written by a world-renowned cognitive specialist, an extraordinary house call physician, and an award-winning author on eldercare issues, this book addresses both normal and abnormal decline and best practices for addressing both. Brain health, cognitive impairment, and mood disorders are serious issues. This book is an accessible starting point for understanding healthy brain aging and when to seek help. It's never too soon to start preventing cognitive decline, or understanding it once it's begun, and this book offers the perfect entry point for readers young and old.

Authors' Bios:
William E. Mansbach, PhD, is the founder and chief executive officer of Mansbach Health Tools LLC, which supports the BCAT® Research Center. He is also the chief executive officer and president of CounterPoint Health Services, a multidisciplinary behavioral health-care company specializing in geriatrics. For many years, he was the chief operating officer of the largest geriatric behavioral health-care company in the United States specializing in long-term care. Prior to this, he was cofounder and chief executive officer of Comprehensive Geriatric Services, a Maryland-based company providing mental health services to residents in long-term care settings. Mansbach has an international reputation as a researcher, clinician, and consultant in the aging field. He has been a pioneer in the development of memory clinics, and is the creator of the BCAT® system, an integrated approach of cognitive tests, interventions, and dementia prevention programs.

Steven P. Simmons, MD, is a board-certified internist. In 1996, Dr. Simmons was selected by his peers to receive the Dr. Annie Yee Johnson Memorial Award for compassion and professionalism. He spent twelve years working in primary and urgent care at Kaiser Permanente before joining DocTalker in 2008, where he spearheaded the practice's house call program. He now is the Associate Medical Director of Allegiance Physician House Calls serving the greater DC area. Dr. Simmons is a member of the American Geriatric Society and the Academy of Home Care Physicians, and he presents frequently on providing medical care to the homebound through house calls.

Jodi Lyons is an eldercare expert who helps older adults and those with special needs find the care they need throughout the country. An ardent patient advocate, Ms. Lyons helps people navigate the complicated, often convoluted system, identify what they need, and learn how to create an action plan. With more than twenty years' experience in the nonprofit healthcare arena, she has been a leader in national and international organizations representing healthcare and long-term care service providers. A graduate of Brandeis University, she was on the Executive Committee of the Alzheimer's Association/National Capital Area and an Alzheimer's Association Ambassador to Capitol Hill. Lyons is a writer for and industry advisor to Telemedicine Magazine. In addition to being a co-author of Brain Health As you Age, she also wrote the award-winning book The Smart Person's Guide to Eldercare to empower and educate consumers, to make sense of a complex system, and to highlight some of the humor that can be found even in the most challenging times as we grow older.

Product Details:
Hardcover
Language: English
Published by: Rowman & Littlefield
An imprint of The Rowman & Littlefield Publishing Group, Inc., 4501 Forbes Boulevard, Suite 200, Lanham, Maryland 20706 https://protect2.fireeye.com/url?k=c19cbeb5-9dc8a7c9-c19c8f8a-0cc47adc5fa2-66a7d1369f4c2f69&u=http://www.rowman.com/
British Library Cataloguing in Publication Information Available
Library of Congress Cataloging-in-Publication Data
Names: Simmons, Steven P., 1966-, author. | Mansbach, William E., 1959-, author. | Lyons, Jodi L., 1966-, author.
Title: Brain health as you age: a practical guide to maintenance and prevention / Steven P. Simmons, William E. Mansbach, Jodi L. Lyons.
Description: Lanham: Rowman & Littlefield, [2018] | Includes bibliographical references and index. Identifiers: LCCN 2018009451 (print) | LCCN 2018010511 (ebook) | ISBN 9781538109175 (ebook) | ISBN 9781538109168 (cloth: alk. paper)

Topics for speaking engagements:
Brain Health, Alzheimer's, dementia, surviving a stroke, ways to mitigate your risks for dementia, brain health and financial plans, brain health and legal issues, caring for the caregiver, planning for your future when dementia is a factor, "Mom still knows me, so she's fine, right?!" and more.

To book the authors for an event or an interview:
Diane S. Nine, Esq., Nine Speakers, Inc.


B. Bauer  |  08-19-2019

My attached input suggest that NAPA goal No1 is in danger of not being met in accordance with current direction. It also sadly indicates the probability of the baby boomer generation doomed to Alzheimer's Disease. I submitted a public input that is included in the 2018 Public Comments (October 22, 2018) on a prevention Hypothesis. The attached input contains this hypothesis, made by well recognized researchers.

I am not associated with any organization but I am author of an Alzheimer's book (see attached) and caregiver now headed for my 19th year of caring for my wife's Alzheimer's Disease.

If this advisory council is serious about prevention, begin by addressing the Asymptomatic stage before neuron loss starts. Once neuron loss starts, the disease has enter the area of research uncertainties, namely the brain's immune system, TAU fibrils, and tangles, neurodegeneration, inflammation, normal aging neuron loss, the mitochondria, etc.

Until Braak and Braak's 1991 and 2006 evidence is debunked, as well as others, neuron damage, when symptoms appear, is too great for current research knowledge to solve (in all due respect). Be realistic and focus on stopping Beta Amyloid plaque aggregation, as well as continuing basic and transitional research.

ATTACHMENT:

What is the Outlook

The outlook is far from rosy. The following offers Bruce's view of Presymptomatic AD, Current Research, Market Possibilities, Government Efforts, Realism for Patients,

Presymptomatic AD

In simple terms, amyloid plaque begins to aggregate during the asymptomatic stage without awareness. It reaches a point where it triggers TAU fibrils and tangles beginning a Prodromal AD stage along with the start of neuron loos. The neuron loss continues (unaware) for an assumed 10-year period when memory signs and symptoms begin (diagnosed as Mild Cognitive Impairment - MCI)

Current Research

A guide for an intervention to reach the market starts with basic research and progresses through clinical trials to a market approval in 16 years, if successful.

Currently, there are three main types of interventions in trials for treatment and/or prevention of AD. The Solanezumab (MAB = monoclonal antibody - an injection) A4 study trial is one with a primary outcome of cognitive benefit efficacy. Another is treatment trials for the TAU protein fibrils and tangles. Finally, there is one remaining BACE inhibitor trials for amyloid.

Solanezumab (failed at targets of mild and moderate AD) A4 Study trial started Feb 2014 with a completion target of July 2022. Patients are from 65 - 85. The primary outcome measure is change in cognition from baseline. Solanezumab started in the laboratory in 2002. There are multiple TAU trials, some in Phase 1 and some in Phase 2, no Phase 3. All but one of the BACE inhibitor trials have terminated due to concerns to meet cognitive primary outcomes. These trials were for patient with MCI and Mild AD.

Market Possibilities

With a completion of July 2022 for Solanezumab, a possible 2024 market appearance could be possible if judge successful for cognitive efficacy. However, with AD patients of age 65 - 85, cognitive efficacy is realistically uncertain, considering that neuron loss due to age begins to enter the picture as well as the probability that even if some had no further disease decline, it is unlikely that all would fit a scenario for cognitive efficacy. Without meaningful cognitive benefit, satisfying the primary outcome is unlikely, thus another failed trial. Watch and See.

As for TAU, trials now in Phase 2, will have a phase 3 to follow, therefore it could be 2028 - 2030 for a market opportunity. However, TAU has uncertainties. Fibrils and tangles are known to cause both internal cell nucleus damage, as well as external damage leading to neuron loss but with uncertainty as to which one or both influence AD pathology. Realistically, there seem to be too many uncertainty for current patient hope. However, stopping Tau fibrils and tangles is needed for treatment of Prodromal AD where neuron loss has started, so continue research is of the essence.

The lone remaining BACE inhibitor has the uncertainty of what stopped the other BACE inhibitors. The remaining BACE is accepting patients of age 50 - 85 who have MCI or Mild AD and the trial is targeted for completion in November 2023, which would make market introduction possibly in early 2026, if successful.

This is not a rosy picture for meeting NAPA's 2025 No. 1 goal. So, ehat happened to the A3 study notification for NIH support/

Government Efforts

The FDA market requirement for an AD intervention is to demonstrate "MEANINGFUL COGNITIVE BENEFIT". Since early presymptomatic has no cognitive symptoms, how can this be demonstrated? The FDA early presymptomatic AD guidance indicated openness to consider recommendations. Could such a recommendation be: "treating Beta Amyloid as a separate disease for the Asymptomatic stage? Have a primary outcome of dissolving plaque and removing it from the brain along with inhibiting plaque aggregation. Theoretically, this would prevent fibrils and tangles as well as neuron loss. Would this be like a statin for heart disease?

An A3 Study notification was submitted in 2016 for NIH support of a public-private partnership of an "Ante-Amyloid Prevention trial (Reisa A Sterling et. al.) and again in 2019 (Paul S. Aisen, et. al.) to treat amyloid plaque with an intervention's primary outcome of inhibiting and eliminating plaque. With an accelerate market approval while conducting a long-term confirmation trial to demonstrate prevention, Asymptomatic candidate could demonstrate this prevention methodology and meet NAPA's No. 1 goal. Also, many monoclonal antibody trials demonstrated dissolution, removal, and inhabitation of plaque. What has happened to this patient hopeful idea?

Realism for Patients

Baby boomers are in range of Prodromal AD and MCI (Figure 1). Neuron loss has probably unknowingly started. With the current uncertainties associated with TAU fibrils and tangles, has neuron loss begun in the transentorhinal and entorhinal cortex, along with the hippocampus (eventually leading to memory symptoms)? A treatment benefit for patients in this stage would be to stop neuron loss. Unfortunately, as current basic research is exploring TAU processes, pathways, mechanisms, immune responses, and other unknowns, baby boomers are increasing their neuron losses as each year passes. How many baby boomers might have been saved if they could have participated in an A3 Study trial in 2016 if it had received NIH support. (Realism arrow pointing to the right basic research to market = 16 years)

Generation X is next. Unless the A3 Study receives support from NIH and starts an accelerated trial, Generation X will follow the Baby Boomers path of transitioning into Prodromal AD and neuron losses. Can Government (including the FDA), Research, and Pharmaceuticals as well as Activists focus on Ante-Amyloid Prevention of Asymptomatic candidates without concerns for cognition. What has happened to the A3 Study trial and patients' hope for prevention?

BABY BOOMERS: ABC's OF ALZHIEMER'S DISEASE

The baby boom generation is between age 55 to 73 as of 2019. Most are unaware that neuron loss has probably already started if they are future AD patients. Generation X is next at ages 40 - 54. Evidence indicates that neuron loss due to TAU fibrils and tangles begins during the Prodromal AD stage (Figure 1). What is the outlook? Author and Caregiver Bruce Bauer offers the following insight and possibilities.

FIGURE 1: Stages and Generations of Late Onset Alzheimers Disease

H. Shrestha  |  08-11-2019


I would like to visit NIH and NAPA and other concerned institutes in Bethesda, Maryland to consult and learn on the issues of policy, advocacy and research related dementia and Alzheimer's disease in North America. I will plan to visit NIH and NAPA from September 22 to 26, 2019.

Earlier, I have participated the Research Summit on Dementia in October 2017. Currently, I am doing my M.A. interdisciplinary health with medical anthropology and working on my dissertation on community-based research on dementia care in indigenous communities in Canada. I truly believe that it would be great help me to write my dissertation. Also, I would like to have a brief courtesy meeting with council members Madam Cynthia Huling Hummel and Katie Brandt and other available Council members or researchers if possible.

JULY 2019 COMMENTS

D. Kan  |  07-25-2019

Please take just seven minutes out of your busy day to watch Leaving Alzheimer's Behind [https://www.beingpatient.com/man-with-dementia-cycles-350-miles/], a Being Patient short documentary.

Peter Berry is a person from the United Kingdom who has been diagnosed with early-onset Alzheimer's. I interviewed him previously for our Being Patient Perspectives [https://www.beingpatient.com/early-onset-dementia-symptoms/] series. An avid cyclist, Peter remarked during our interview that when he gets on his bicycle, he leaves Alzheimer's behind. I thought that was such a powerful statement to make -- to have control over Alzheimer's and the ability to get away from the disease. I was so inspired by Peter that we decided to make a short documentary about him in collaboration with our friends at Needle Space Labs [https://theneedle.space/].

We hope it serves as a reminder that if you are diagnosed with Alzheimer's, you still have the ability to take control of the disease.

If you would like to share Leaving Alzheimer's Behind on your website, please do so by posting this link to your page: https://youtu.be/5bxnYzjj8lU. All we ask is that you add attribution (This video was produced by https://protect2.fireeye.com/url?k=ab3d84a6-f7688db5-ab3db599-0cc47adb5650-ec3619d6c5173e62&u=http://www.beingpatient.com/.) alongside the video.

I hope you are as inspired by Peter as we are.

M. Hogan  |  07-23-2019

Good morning. I am glad to be in attendance this quarter and sorry that I missed the meeting dedicated to Person Centered Planning, a topic near and dear to my heart. I listened to the April meeting on line in prep for today's comments. My personal experience with PCP is that it is often misunderstood and inconsistently applied. It is often static rather than dynamic. Perhaps the efforts of this Council and CMS will facilitate change.

Today I bring to you the print form of the Alzheimer's Disease and Down Syndrome A Practical Guidebook for Caregivers[1]. This publication was funded by the National Down Syndrome Society, written by lead author Dr. Julie Moran, a practicing geriatrician and member of the NTG, with input and assistance from several NTG members. We also benefitted from input offered by the Alzheimer's Association. It took almost two years to nurse the publication from concept to print form. Many are greatly relieved to know that the Caregiver Guidebook is now accessible in print form in both English and Spanish.

The Caregiver Guidebook is also available electronically in English, Spanish and will soon be posted in French. Plans are approved and underway for a Dutch translation facilitated by an international colleague who also translated Aging and Down Syndrome into Dutch.

Since release of the electronic and print publications, the feedback has been positive from both families and professionals. I hope you will take time to read it carefully, appreciate the richness of the text while viewing the many photos that have been included of people with DS. The photos communicate the human suffering that often accompanies AD and they are profoundly touching. The images convey the journey that unfolded for many individuals and their families. Their reality has been respectfully offered and honorably conveyed.

On the cover of the Guidebook is Irma Fella who was born in Detroit, Michigan in 1945. When Irma was born, the life expectancy of babies with Down syndrome was about 13. She passed away at age 74 on July 16th of this year in San Diego, CA.

After the death of their Mother In 1992, Irma, age 47, moved to San Diego, California to be near her sister Evelyn. Evelyn became Irma's advocate and champion. For many years after her move, Irma thrived. She became more independent, enjoyed her life in her group home, attended a sheltered workshop, formed many new friendships and remained very active.

Neither Evelyn nor I can remember how we found one another, but we came together to share our experiences after Irma began to decline at or about age 60. She faced many challenges including transitions in her care setting. I visited them in San Diego and we continued to remain in contact these last several years. I have remained aware of the significant challenges that both Irma and Evelyn have faced and I am grateful for all that they have shared with me and other families.

Irma's story is pertinent today as a follow up to last quarters discussion of Person Centered Planning. Like most individuals with ID and their families who face a diagnosis of ADRD, Irma and Evelyn were primarily left to their own devices as Irma declined. There was no person centered planning facilitation, no point of contact for a care team or care manager, no quality delivery system, quality measures or continuous learning opportunities for caregivers. Dementia Care, based on best practices, was only a dream, never a reality. Shawn Terrell noted during the April 2019 meeting that PCP was a concept familiar in the disability community. In my experience and that of many families, PCP has not been consistently applied to older individuals with ID and complex care needs even in advance of a diagnosis of ADRD. If there was planning, it lacked consistency, was not a dynamic and had no practice standards. The reality is that most of our older family members in the ID community have not had access to PCP with standards for implementation.

Over the course of Irma's decline she sometimes experienced undiagnosed complications like UTI's and skin infections complicated by diagnostic overshadowing. Evelyn continuously sought to advocate for timely, appropriate medical care for Irma and stressed positive functional outcomes for her.

For a long period of time Evelyn personally hired extra staff to be available to Irma in her care facility, especially during mealtime to ensure that Irma had ample time to access nutrition. These devoted caregivers saw to it that Irma had reason to smile even in the final years of her life. Irma's roommate vigilantly watched over her for the past seven years and was often the most accurate contact person for Evelyn. She was in many ways, Irma's lifeline.

The story of Evelyn and Irma remains all too familiar as families and caregivers strive to provide support to their family member with ID and ADRD. It is our hope that one day we can come to expect that Person Centered Care can become the lived experience for all people with complex care needs such as ADRD. We are hopeful that the focus on planning will include not only the medical needs but also the social, behavioral, environmental, spiritual and relational needs of our family members. We want those who shape policy and practice to recognize that people with ID have preferences and values that should guide all aspects of their future healthcare. They, too, should have access to a dynamic care team that will create and effectively implement a person centered care plan that will ensure quality of life until the end of life.

You are free, Irma. You have lived an inspirational life and for that we are eternally grateful.

NOTES:
  1. National Down Syndrome Society. (2019). Alzheimer's Disease and Down Syndrome: A Practical Guidebook for Caregivers. Washington, DC: NDSS. https://www.ndss.org/wp-content/uploads/2018/12/NDSS_Guidebook_FINAL.pdf.

M. Sterling  |  07-23-2019

For those who don't know me, Alzheimer's and other forms of dementia have had a profound impact on my family. My husband and I have 3-out-of-4 parents who have struggled with three different forms of dementia.

My father-in-law, the only one definitively diagnosed with Alzheimer's, passed away on June 22nd, bringing a long, painful era to an end. For my husband's family, it meant the sad loss of its patriarch. For me, there's a much more profound meaning. This is the first time since I was a teenager that I don't have a parent or parent-in-law with dementia. I'm 52.

All these years after the start of this journey, the world has changed dramatically. The information age and technology have changed how we interface with the world.

But some things have not changed.

Emergency room visits, hospital stays, nursing home and end-of-life care are all provided by people who have no idea how to provide care for someone who has Alzheimer's or interact with their family.

Adequate support for family caregivers remains elusive. We are gathered in Facebook groups trying to gather "tribal knowledge" from other caregivers, unable to find resources in our own communities.

Women are disproportionately impacted. An entire generation of women will lose their jobs, financial security, physical and emotional health because of caregiving responsibilities.

The duration of dementia caregiving is seldom discussed and another devastating blow to families. The inability to obtain affordable, dependable, knowledgeable home healthcare is depressing.

The Medicaid eligibility process is painfully complex, and families often just give up and drain their own finances trying to manage on their own. This has repercussions that I can't even begin to address.

The incorporation of patient and family caregiver voices in research is agonizingly slow. Despite several bright spots, the research community largely remains skeptical and slow to adopt new practices, including the transformation of clinical trials to accommodate those with Alzheimer's and their caregivers, who often cannot leave their homes and travel to distant academic medical centers in order to participate.

Despite these observations, I remain hopeful -- thanks to relentless advocates and new avenues of research. But dramatic change will only come when those who have lived with dementia and their families are included at every table -- and collaborating with every researcher, policy maker, and healthcare delivery professional both here and around the world.


C. Alcorn  |  07-22-2019

As reported by the Alzheimer's Impact Movement, the Alzheimer's and related dementia research funding at NIH has increased steadily from $448 million in 2011 to $2.3 billion in 2019 (AIM, 2019). The impact of the increased spending is multifaceted and has permitted the development of new research tools and techniques as well as diverse hypotheses as to the causes of neurodegenerative diseases and targets for intervention. Yet, review of the Alzheimer's disease drug development pipeline shows Alzheimer's research productivity may be in decline.

A simple, objective metric for Alzheimer's research is the number of drugs in Phase 3 clinical trials. Analyses of the Alzheimer's drug pipeline show the number of disease-modifying drugs in Phase 3 clinical trials declined 14% in 2018 and declined another 11% in 2019. The number of drugs in prevention trials also declined by 14% in 2019 while unchanged in 2018 (UsAgainstAlzheimer's, 2018; UsAgainstAlzheimer's, 2019). This trend is disturbing as these trials are necessary to validate or disprove research hypotheses by assessing whether resulting treatments produce clinically meaningful benefits. Absent these trials, there will be no treatment.

Another Alzheimer's metric might be the total research investment. A compilation of both public and private investment would strengthen reporting as solely looking at public investment may yield an incorrect perception, particularly if public sector spending is rising as private sector investment is declining (Rowland, 2019; Weild IV & Pickett, 2019). Unfortunately, a source for timely and accurate information regarding private investment is not known to the undersigned apart from the implementation of a survey of sponsors of Alzheimer's research.

The Advisory Council should evaluate Alzheimer's research performance metrics to be reported and explained. The impetus for this suggestion is a concern that the product development pipeline appears to be clogged as evidenced by the declining rate of Phase 3 clinical trials. Further information may better define actions (beyond increased funding at NIH) that are needed to permit the pipeline to flow.

References

AIM. (2019, July 18). ALZHEIMER'S AND DEMENTIA RESEARCH. Retrieved from Alzheimer's Impact Movement: https://alzimpact.org/priorities/research

Rowland,C. (2019, July 5). Alzheimer's research is getting a reboot at small companies focused on the immune system. The Washington Post. Retrieved from https://www.tulsaworld.com/news/trending/alzheimer-s-research-is-getting-a-reboot-at-smaII­companies/article_58574e35-ee07-Sfba-9d82-2eba98b3b343.html

UsAgainstAlzheimer's. (2018, July). The Current State of Alzheimer's Drug Development 2018 Alzheimer's Drug Pipeline. Retrieved from USAgainstAlzheimer's: https://www.usagainstalzheimers.org/sites/default/files/2018_Alzheimers_Drug_Pipeline_The_Current_State_Of_Alzheimers_Drug_Development.pdf

UsAgainstAlzheimer's. (2019, July). The Current State of Alzheimer's Drug Development 2019Alzheimer's Drug Pipeline. Retrieved from UsAgainstAlzheimer's: https://www.usagainstalzheimers.org/sites/default/files/2019-07/RAAPages_FlNAL.pdf

Weild IV, D., & Pickett, H.V. (2019, Feb 22). Opinion: With News of Another Failed Trial, a Cure for Alzheimer's May Have More To Do With Corporate Finance Than Science. Being Patient. Retrieved from https://www.beingpatient.com/alzheimers-search-for-a-cure-common-need­investment/


D. Blackwelder  |  07-20-2019

Hello and thank you again for the opportunity to speak to you again about my lived experience with Younger Onset Alzheimer's. Today, I have some disturbing news to report but feel the more that are made aware, the more likely action will be taken to stop a disturbing practice of physically restraining the elderly and people living with dementia including by family caregivers. As a point of reference the World Health Organization has published a brief stipulating the importance of "...ensuring that those responsible for protecting the human rights of people living with dementia should be held accountable for any human rights violations. In addition, there should be increased education about dementia to change attitudes of society and reduce stigma. Lastly, people living with dementia should be empowered to participate in decision making processes and to maintain their legal capacity..."

Unfortunately, Amazon in the US, Canada and UK is advertising a variety of physical restraints with titles and descriptions of being for "the elderly" or persons with "dementia" or "senile dementia". See below screen captures with photos of the restraint devices. While it is not illegal to sell restraints, it is in violation of our human rights as people living with dementia to be restrained merely because we have a diagnosis of dementia. I hope each of you are as sickened as I am when viewing these ads by Amazon and will take every action in your power to change this. To date, Amazon UK has promised to cease with these ads but have failed to do so and Amazon U.S. and Canada has been silent. Amazon knowingly and egregiously perpetuates the stigma based practice of physically restraining persons merely because of age of dementia diagnosis in direct violation of our human rights. Having these kinds of ads on a popular shopping site like Amazon not only perpetuates the stigmas but creates an environment where family and other non-professional caregivers may believe this is an appropriate way to treat us.

https://www.who.int/mental_health/neurology/dementia/dementia_thematicbrief_human_rights.pdf

----- ----- ----- ----- -----

July 6, 2019 and again on July 20, 2019 -- Reported incorrect product information on multiple ads directly to Amazon with no response received to date.

Violation of human rights as "elderly" or "senile dementia" dx does not warrant restraint, per World Health Organization this is a violation of human rights.

https://www.amazon.com/YxnGu-Knee-Legs-Feet-Bound/dp/B07RZQ2KBJ/ref=sr_1_117?keywords=dementia+restraints&qid=1562437818&s=gateway&sr=8-117

Image of GFYWZ Patient Restraint Bundled Clothing.
Image of YxnGu Medical Adjustable Patients Constraint Band. Image of Patient Restraint Upper Garment. Image of Patient Restraint Upper Garment.
Image of YxnGu Knee Legs and Feet Bound Band.

C. Danesi  |  07-17-2019

Two minutes may not seem very long for most but for me they must be worth a lifetime. As many of you know, my mom has had this wretched illness for many years. Projected by all of her doctors and specialists to live at the very most one year from the point of diagnosis--she's lived more than twenty and is still here as you can see today. If anyone should be called a survivor it should be her, myself and my family. Having endured and overcome struggles, challenges and obstacles that most people will be fortunate enough to never have to go through in their lifetimes, we know the unimaginable suffering that comes with this brutal disease. We also know that to survive it you must think outside of the box. As you may know, I have been advocating for change in the Alzheimer's world for many years. The compound that I truly believe can be a game changer in the trajectory of this illness, after many years of trying has finally made it to phase one human trials as of February this year. Although I have to be patient as data is collected and things progress, I am confident that J147 is going to do extremely well and not only will have the ability to help treat the illness throughout various stages-I also believe it will have preventative capabilities if taken early enough. I do not proclaim to be a researcher or a medical professional. What I do proclaim to be is a daughter-a daughter who's life and family was destroyed when we were given my beloved mother's diagnosis so many years ago. Desperate, alone and afraid I did the only thing that I could do and that was to fight back. I fought to reach my mom-to get into her world-the world that this brutal disease had pulled her into and pull her back for myself, my father and my family. So here we are in the present and my mom will be turning 74 years old in September. Where do mom and I go from here? Some people say if J147 makes it-it won't help your mother-it's too late. My response to them is how do you know? And so now as we embark on what may be our final journey in our story, Mom and I have one imperative message for everyone: Acceleration-5 to 10 years for a new and better compound like J147 to come to accessibility is an unacceptable amount of time while millions of Americans and their families across the nation are suffering. If J147 proves that it can do what I feel in my gut it can do, I ask that you join me in making sure that J147 comes to fruition Fast so that millions can be helped and the future trajectory of this illness, where before held only despair will now hold true hope in my mother's honor and for all those who have been forever affected. I will close my comment with this: Mom I thank God every day for the time we have together and no matter what happens I love you so much more than words can describe. Thank you.

At that time, at the council's discretion, I respectfully request a brief moment for anyone present that would like to ask questions of me regarding mom and the proactive path we chose for her. My answers would of course be polite, kind and informative.


J. Tepper  |  07-01-2019

The following information appears to have significant implication to fight for conquering the Dementia plague. I thought it will be of interest since it has the promise of being a breakthrough.

Hopefully, it will motivate action from the dementia research sphere for generating the experimental data and providing the necessary study proof. It bound to prompt a wide implementation of the simple procedure outlined bellow, and hence, it has a potential to prevent the onset of dementia altogether.

If you are in a position to make the difference, in some way, I urge you to take action and be part of the solution to render dementia history.

Reduced blood flow in the brain is known to result in elevated brain temperature (see, for example, the pasted references below).

Reduced blood flow is in all likelihood fairly common in the elderly, and in some cases even possibly in younger adults. It would, therefore, cause an increase of the brain temperature and is liable to result in damage to brain-cells. This could be in particular true where the condition becomes chronic and lingers on silently for years without being directly detected; way before any symptoms of dementia manifest themselves.

It follows that a routine monitoring of blood-flow to the brain, similar to how blood-pressure is routinely tested, would allow a timely clinical/pharmacological intervention to take place and correct the condition. It's likely to alleviate the onset of dementia in all of its forms.

The process of monitoring brain-blood-flow can readily be accomplished nowadays. Although, being even less invasive, it's somewhat more cumbersome of that of blood-pressure measurement. However, ultimately it bound to be just as simple as, say, taking temperature with an electronic-thermometer (and not more costly at that).

Aristotle, allegedly, stated that: "the role of the blood in the brain is to COOL the brain". Ironically, he may have been right for a change.

At least this time.

PASTED REFERENCES:

CCSVI, Brain Cooling and Blood Flow
Posted on September 3, 2010 by uprightdoctor

"The upper cervical spine plays an important role in the venous drainage system of the brain, brain blood flow and brain COOLING...
...decreased blood flow and DECREASED COOLING capacity of the brain."
(emph. added j.t.)

-------------------------------------------

Cerebral Cooling During Increased Cerebral Blood Flow in the Monkey
ArticleinProceedings of The Society for Experimental Biology and Medicine 124(2):555-7 -- March 1967with1 Read
DOI: 10.3181/00379727-124-31788 -- Source: PubMed

Abstract
"...Intracerebral temperature gradients are basically dependent upon the rate of REMOVAL of heat from the brain by the arterial blood."
(emph. added j.t.)

-------------------------------------------

Comparison of brain temperature to core temperature J Neurosci Nurs. 2004 Feb;36(1):23-31.

Abstract
"...acute neurological injury...
...All 15 studies found that brain temperature was HIGHER than all measures of core temperature with mean differences of 0.39 to 2.5 degrees C reported."
(emph. added j.t.)

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

P.S.
The following references were, subsequently, brought to my attention:

Late-Onset Dementia: Structural Brain Damage and Total CerebralBlood Flow
By: Aart Spilt, MD et al.
RadiologyVolume 236, Issue 3Sep 1 2005

"... blood flow in the brain was 742 milliliters per minute among the healthy, young adults ...
... among the dementia group was 443 milliliters per minute ...
... In patients with dementia, cerebral blood flow was 108 mL/min lower than that in subjects of the same age with optimal cognitive function ..."

-------------------------------------------

Also,

Cerebral Blood Flow in ... Nondemented Elderly Subjects with Subjective Cognitive Impairment
By: Niwa F, et al.
Intern Med. 2016;55(24):3571-3578. Epub 2016 Dec 15.

"cerebral blood flow ... is useful in the early diagnosis of dementia."

-------------------------------------------

Also,

Neutrophil Adhesion in Brain Capillaries Reduces Cortical Blood Flow and Impairs Memory Function in Alzheimer's Disease Mouse Models
By: Jean C. Cruz Hernandez et al.
published in Nature Neuroscience

"... brain blood flow deficits are one of the earliest detectable symptoms of dementia."

-------------------------------------------

Also,

from: BioMed Central Ltd Springer Nature Alzheimer's Research & Therapy20179:37
By: Jessica Mira Gabin et al.

"... Association between blood pressure and Alzheimer disease measured up to 27 years prior to diagnosis ..."


G. Kleiner1  |  07-01-2019

I am a Neurologist/Researcher based in Canada doing research for therapeutics in advanced dementia to improve quality of life and ease caregiver burden, a surrogate marker for pain and discomfort in those affected by end stage Alzheimer's disease (AD) and other dementias.

I am looking to correspond with a senior member of the scientific advisory board of the National Alzheimer's Project Act (NAPA) and hoping this message can be directed to an appropriate individual within the organization.

While much investment in research has been targeting pre-clinical stages of AD, my research relates to using Botulinum Toxin, a drug on the market for decades and deemed safe, to address involuntary postures in people with advanced AD to prevent painful contractures, and consequences of these, like pressure sores and spontaneous fractures. There is also reduced pain, infections and suffering.

Families are reporting to us that with treatment, their loved one has dignity and comfort which has a huge impact on their loved one and their own (caregiver) quality of life.

I am looking at "outside the box" approaches to pursuing additional research in this area as well as wider recognition that this could be potentially available as currently there is no pharmacological therapeutic agent available to treat symptoms of advanced AD and people are suffering which could be ameliorated.

My ultimate goal is to perform large scale FDA registration trials to recreate our results and result in an "approved indication" for palliative treatment of advanced dementia and improvement in quality of life.

While I am pursuing NIH and other funding to move forward this research, I am also reaching out to other organizations that represent people living with AD and their families, to inform them of this treatment, garner support, and seek additional partnerships and collaboration with relevant stakeholders.

One barrier to commercialization regarding this potential successful treatment to manage this terrible condition is re-imbursement policy in long-term care (LTC) such that currently, even if there were an FDA-approved indication, treatments would not be re-imbursed if the treatment was provided in the facility where a patient resides.

In contrast, in Canada, where I practice, I have been providing treatments in LTC for years with excellent benefit and cost savings as patients have less complications. As such, current policy related to LTC practices and reimbursements need to be reconsidered. This may require political will and access to policy makers to reconcile potentially outdated policy, with novel science that could revolutionize treatment as well as impact healthcare costs.

I would be very interested in connecting with the executive of NAPA to discuss potential alignments and would be very happy to provide a formal presentation of the project and my vision including aspects of policy and current standard of care currently available. It is very compelling. I believe this has the potential to affect millions of Americans affected by AD and other dementias and will look forward to hearing from you after your review of the research and executive summary attached herein.

ATTACHMENT #1:

Executive Summary

Involuntary postures occur in advanced dementia due to increased tone called Paratonia. These postures lead to substantial morbidity and profound suffering and reduction in quality of life. Currently, 5M people in the US alone and 48M worldwide suffer from dementia. All people with dementia will eventually get paratonia and consequent involuntary postures. There is currently no effective treatment for Paratonia or its consequences.

Botulinum toxin A (BoNT) has been extensively developed marketed and implemented for decades demonstrating remarkable safety and efficacy. It works by making muscles temporarily weak when they are inappropriately overactive in the setting of a neurological condition. Stroke is one condition where treatment of stiff muscles with BoNT is the standard of care and is widely used as a first line treatment of "spasticity", the neurological term applied to stiff muscles that are caused by stroke or other neurological injuries of the brain or spinal cord.

Spasticity is a complex phenomenon postulated to emanate from reduced inhibitory impulses resulting in increased signals for the muscles to contract. There is a specific pattern of stiffness recognized in stroke spasticity including flexed elbow, clenched fist, flexed knees and others. By making these selective muscles weak with BoNT, there is increased range of motion in those joints. Untreated, spastic muscles become permanently contracted a natural process where muscles undergo permanent changes in its properties as a result of being in a prolonged shortened state, to become a fibrous band which is fixed and untreatable. Treating with BoNT early may delay or prevent the formation of contractures. It is desirable to prevent contractures as these result in pressure ulcers, fractures, substantial pain and immobility with reduction in quality of life, increased caregiver burden and substantial increase in health care utilization and resources.

BoNT is considered the "standard of care" people to treat stroke-related spasticity with excellent outcomes to loosen the muscles and reduce contractures and their consequences. There have been large Phase III clinical trials for BoNT in spasticity and an FDA/Health Canada approved indication exists.

In Canada given the approved indication, there is also a successful re-imbursement process for the drug as well as for the practitioner who administers this product. There is a "limited-use" (LU) code for BoNT for stroke spasticity and in Ontario, Doctors travel to LTC facilities and provide "mobile clinics" so patients with limited mobility receive treatment at the bedside. In the US there is a more limited market as spasticity treatment with BoNT may only be performed in an outpatient clinic thereby in order for the drug to be re-imbursed thereby excluding patients with more advanced disease who may need it most. The re-imbursement policy in the US remains a barrier to full commercialization in the US for spasticity.

Due to the profound benefit of BoNT injection to reduce muscle tone in stroke spasticity, we hypothesized that treating those with dementia (who also have involuntary muscle postures identical to those in stroke but due to Paratonia, a different physiological mechanism and associated only with dementia), with BoNT would also have the same result of reducing involuntary postures with all the same benefits as for those receiving it for stroke spasticity.

Our small pilot trial "A Randomized, Placebo Controlled Pilot Trial of Botulinum Toxin for Paratonic Rigidity in People with Advanced Cognitive Impairment" published in 2014 in PLoS1 is the first to demonstrate safety and efficacy in using BoNT to treat involuntary postures in this frail elderly population, as well as feasibility to conduct methodologically rigorous studies in long term care. Magnitude of effect in terms of disability scales and improvement in range of motion are comparable or greater than those for upper limb spasticity due to stroke.

Given the "epidemic" of dementia with 15 million people in the US (136M worldwide) predicted to suffer dementia by 2050 with no neuroprotective OR symptomatic treatment available to address symptoms of dementia, the use of BoNT is an attractive strategy to manage costly complications of dementia and significantly improve quality of life in those with advanced symptoms.

Despite the promising therapeutic benefit and confirmed safety for a drug already developed and applied widely for decades in other well-studied indications like spasticity, the barrier to commercialization and lack of investment in the development of the indication to date by pharmaceutical companies, is due to the fact that this population resides (and suffers) in long-term care facilities where current re-imbursement policies in the US, prevent a clear path to re-imbursement as US policy dictates that treatment with BoNT must occur in an outpatient clinic and not in LTC. As people with advanced dementia have logistical barriers to travel away from LTC, current policy prevents access to treatment.

Well-designed multi-center trials are needed to confirm preliminary promising findings for the first treatment pharmacological treatment proposed to reduce pain and caregiver burden, a surrogate measure for suffering for those with advanced dementia. Success of such trials could result in a paradigm shift in how people with advanced dementia are managed with the US leading a global effort to improve standard of care for people with advanced AD.

ATTACHMENT #2:

Kleiner-Fisman, Galit, Edwin Khoo, Nikohl Moncrieffe, Triina Forbell, Pearl Gryfe, and David Fisman (2014). "A Randomized, Placebo Controlled Pilot Trial of Botulinum Toxin for Paratonic Rigidity in People with Advanced Cognitive Impairment". PLoS ONE, 9(12): e114733. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0114733.


JUNE 2019 COMMENTS

unnamed  |  06-26-2019

Uganda Alliance of patients' organizations (UAPO) would like to participate in the 2020 upcoming summit. This will help us learn new knowledge and to expand reach and access of services to the communities.

Please guide on possible participation considering we UAPO is outside of USA.

ANSWER:

Our office is not handling the overall coordination of the 2020 Summit. You can go to https://www.nia.nih.gov/research/blog/2019/06/help-us-share-2020-dementia-care-caregiving-summit, on the NIH website, to get more information on how to be involved.


G. Skole  |  06-20-2019

I am the CEO of a company called AlzBetter and we focus on helping companies provide person-centered care for people with dementia. We have a very unique approach including technology and targeted micro-learning videos. It looks like you are doing some very interesting work and I would like to see how I could become more involved in what you are doing. I look forward to hearing from you.


MAY 2019 COMMENTS

R. Maxwell  |  05-07-2019

I am currently seeking research/resources regarding the initial design and layout of newly constructed memory care facilities. Can you offer/direct me to relevant materials?


APRIL 2019 COMMENTS

M. Sterling  |  4-25-2019

For those who don't know me, Alzheimer's and other forms of dementia have had a profound impact on my family. My husband and I have 3-out-of-4 parents impacted by the disease.

Person-centered care has been the theme of today's Council meeting. We know what person-centered dementia care SHOULD look like and more importantly, what it SHOULD NOT look like. I stopped by today to share a story about the latter. Person centered-ness includes the ability of families to access affordable home healthcare seamlessly. My father-in-law is a low-income senior, a veteran, and has Alzheimer's. He now requires 24x7 supervision and care. My mother-in-law and my husband worked for several years to complete all the paperwork and phone calls required to establish his eligibility for VA Aide and Attendance benefits and Medicaid. My mother-in-law was relieved when the VA finally agreed, last fall, to send a caregiver to assist her -- and the caregiver was well-versed in dementia care. The downside: she was limited to 6 hours per week.

My father-in-law's disease has progressed dramatically, and my mother-in-law needed more help. She turned to social services to get additional support and was told that the VA and Medicaid don't work together. In fact, if she accepts caregiving support that is paid for by Medicaid, she will have to give up the caregiver provided by the VA -- the well-trained, compassionate caregiver who has established a wonderful rapport with both of my in-laws. They are very hard to find, especially in rural Indiana.

Thanks to the relentless advocacy of both a local social worker and a case manager, the home care hours allotted by the VA recently increased to 16 per week -- better, but still not enough. So, my mother-in-law soldiers on... determined to keep her husband out of a nursing home for as long as possible but losing the battle because she does not have the support she needs.

The constant fight to get home care services for our loved ones with dementia is NOT person-centered care, it's shameful. I hope the Council will consider simplifying access to VA and Medicaid home healthcare services as part of it's on-going work to define what person-centered dementia care looks like moving forward.


S. Peschin  |  04-24-2019

I serve as President and CEO of the Alliance for Aging Research. Thank you for the opportunity to comment.

I believe everyone on this advisory council agrees that, only when working in partnership, can clinicians, patients and family caregivers identify values, goals, and preferences and make informed decisions about patient care. Shared decision-making is critical to person-centered care and should become the standard for informed consent in healthcare. Biological aging itself--let alone Alzheimer's disease and related dementias--increases the risk of morbidity and mortality, independent of treatment interventions. And even clinicians trained in geriatrics can have inaccurate impressions of what matters most to their individual older adult patients.

There is a high unmet medical need for neuropsychiatric symptoms in dementia care. Although some evidence-based psychosocial interventions have shown promise in managing these symptoms, they do not always work in isolation. We are encouraged that the clinical pipeline for Alzheimer's disease and related dementias includes promising treatments for agitation and dementia-related psychosis and we hope CMS is monitoring these developments as they move through the FDA approval process.

Among people with Alzheimer's disease, depression is the earliest observable symptom in at least one-third of cases. Additionally, milder symptoms of agitation may manifest early and increase in prevalence and severity with worsening of dementia, often leading to an increase in family caregiver burden, greater morbidity, poorer quality of life, increased cost of care, rapid disease progression, and institutionalization. Many nursing homes lack the staff ratios and adequate training to deal with increasingly complex residents with dementia. So, it is understandable that we have looked to quick fixes, such as mandating the reduction of psychotropic prescriptions, without first understanding the potential impacts on proper diagnosis and treatment of either dementia or NPS. I fear nursing homes will be afraid to even consider new FDA-approved medications, and residents will be left to suffer severe symptoms needlessly.

There is a lack of data-driven information on which to base decisions regarding improvements to dementia care, such as the best potential treatments for agitation in dementia, and the benefits and drawbacks associated with bifurcating treatment for psychosis and agitation.

In April 2005, the FDA issued a "black-box" warning for atypical antipsychotics in the treatment of NPS in older patients with dementia because of a 1.6- to 1.7-fold higher death rate in those taking such drugs compared with those taking placebo. In a pivotal RCT of demented patients already on conventional or atypical antipsychotics, 3-year survival doubled in those randomized to cease treatment. However, a large longitudinal observational study published in the September 2013 issue of the American Journal of Psychiatry challenged these findings by showing that the primary correlate of negative outcomes was the psychiatric symptomatology and not the drugs used to treat these symptoms.

There are few programs that integrate physical and mental healthcare for those with dementia in both institutional and community settings, and this is sorely needed. There is ripe opportunity to openly dialogue about the upcoming clinical pipeline; the third phase of the CMS mega rule and its provisions on NPS and dementia; and how patient advocacy organizations, professional groups, and industry can work with regulators to ensure that all of CMS' available policy levers in coverage and payment are engaged to provide the best care possible for beneficiaries with dementia. The Alliance for Aging Research would like the opportunity to convene with CMS and relevant stakeholders this summer to achieve this dialogue and help initiate practical recommendations prior to implementation of the last phase of the mega rule.

Let's do this together. Millions of beneficiaries stand to benefit and there's no time like the present. Thank you.


T. Flood  |  04-24-2019

Otsuka America Pharmaceutical, Inc. (Otsuka) is pleased to submit the following comments for this meeting of the Advisory Council on Alzheimer's Research, Care, and Services. Otsuka appreciates HHS and ASPE's continued efforts to improve the level and quality of care for patients living with Alzheimer's disease and other forms of dementia. Like many other stakeholders, we are concerned about the use of antipsychotics in Alzheimer's patients and residents of long-term care facilities.

An estimated 5.5 million people age 65 and older in the US have Alzheimer's disease.1 In addition to cognitive decline and other neuropsychiatric symptoms, agitation is a common symptom of Alzheimer's disease that reduces health outcomes and increases costs and burden.2 As federal policymakers consider what has been achieved to date (antipsychotic usage in nursing homes reduced by 38%) and consider ways to further reduce unnecessary prescription use, Otsuka would highlight the following points:

  • Federal policies should support thorough evaluation and treatment of patients with behavioral health issues living in long-term care facilities. Behavioral health issues may stem from varied sources, and should be addressed differently based on the underlying disease:
    • For behavioral health issues related to underlying serious mental illness such as depression, bipolar disorder, or schizophrenia, antipsychotic medications are on-label for these uses and federal policies should not restrict appropriate access to these medications to patients for whom they are in fact appropriate.
    • For behavioral health associated with Alzheimer's disease, such as agitation, non-pharmacologic interventions should be considered first to address other potential underlying causes and factors. Exceptions should be made in the case of emergent or acute episodes, or for patients currently stabilized on an antipsychotic for a previously diagnosed or co-occurring mental illness.
    • Antipsychotic medications should be reasonably limited for use with dementia-related behaviors unresponsive to nonpharmacologic interventions, and within sound clinical guidelines and appropriately labelled indications for use. Although acute and/or persistent neuropsychiatric symptoms may not respond adequately to nonpharmacologic interventions alone, nonpharmacologic approaches should be evaluated for the potential to permit treatment with lower doses of antipsychotic medications.
  • Federal policies should recognize and support appropriate and necessary use of antipsychotic medications for patients with neuropsychiatric symptoms.
    • For antipsychotic use in long-term care facilities, policies should evaluate on-label and off-label use differently. Typical antipsychotics currently used off-label to treat agitation have significant side effects, including over-sedation.3
    • Policy frameworks can and should differentiate between the use of antipsychotics for sedation or chemical restraint, both serious forms of patient abuse, and for the treatment of mental illness and dementia-related neuropsychiatric symptoms that improve patients' quality of life.
    • Clinical indications and effectiveness should be reviewed periodically for all medications, including antipsychotics; however, attempts at gradual dose reduction may be inappropriate or clinically contraindicated for some patients whose behavioral symptoms are currently stabilized or who have a diagnosed serious mental illness.

Burden and impact of agitation in Alzheimer's disease

Behavioral symptoms develop in the majority of people with Alzheimer's disease and many of these symptoms are clinically diagnosed as "agitation," including restlessness, significant emotional distress, aggressive behaviors, and irritability. Symptoms of agitation place a serious burden on the people afflicted with the disease and their caregivers, significantly affecting the quality of life for all concerned. Agitation is often a determining factor in the decision to place patients in high-level residential care facilities, contributing to the roughly $259 billion cost burden of Alzheimer's disease in the U.S.4

Otsuka believes the Advisory Council should further consider the prevalence and clinical and economic burden of agitation in Alzheimer's disease when evaluating current programs and future efforts that impact people living with Alzheimer's and their caregivers. Specifically, the Council should keep in mind:

  • Agitation covers a large group of behaviors occurring in patients with Alzheimer's disease, and is an excessive/inappropriate manifestation of 'normal' human emotions and behaviors. Symptoms of agitation include:
    • Excessive motor activity (e.g. pacing, rocking, gesturing, pointing fingers, restlessness, performing repetitious mannerisms).
    • Verbal aggression (e.g. yelling, speaking in an excessively loud voice, using profanity, screaming, shouting).
    • Physical aggression (e.g. grabbing, shoving, pushing, resisting, hitting others, kicking objects or people, scratching, biting, throwing objects, hitting self, slamming doors, tearing things, and destroying property).5
  • Symptoms of agitation in Alzheimer's disease are associated with significant burden and negative consequences for the patient.6,7,8,9,10,11
    • Physical activity offers promise for the prevention of cognitive decline in older patients with Alzheimer's disease. A study in 437 elderly patients with a range of dementia severities shows that symptoms of agitation (as measured by the Neuropsychiatric Inventory, NPI) are associated with lower rates of participation in physical activities.12
    • Symptoms of agitation, such as becoming upset easily, hoarding, and rejection of care such as bathing and dressing can interfere with the ability of a patient with Alzheimer's disease to carry out the activities of daily living.13
    • Agitation and aggression commonly arise in people with Alzheimer's disease. This can be distressing for the individual and often confers risk to themselves and to others.14
  • Symptoms of agitation in patients with Alzheimer's disease are associated with high burden and negative health, social and economic consequences for their caregivers.
    • Fifty-nine percent of family caregivers of people with Alzheimer's and other dementias rated the emotional stress of caregiving as high or very high.15 In particular, problem behaviors (such as agitation) are consistently related to caregiver distress and depression.16,17
    • Neuropsychiatric symptoms in Alzheimer's disease, including agitation, are associated with reduced employment income for caregivers.18 Data from the US report that almost 60% of US family caregivers of people with dementia are also employed; two thirds of these reported that they missed work, 8% that they turned down promotion opportunities, and up to 31% that they had given up work to attend to caregiving responsibilities.19
  • Neuropsychiatric symptoms, including agitation can result in earlier placement in long-term care.20
    • "...high frequency of distressing behavioural symptoms in patients with dementia can contribute to caregiver burnout, which is the most common cause of institutionalization of patients with dementia."21
    • A systematic review of 80 studies found that behavioral symptoms, such as agitation, were a consistent predictor of nursing home admission in patients with dementia.22
    • A 6-month study of the detailed clinical records of 3075 patients with Alzheimer's disease found that patients with symptoms of agitation were significantly more likely to be admitted to long-term care (care home, general hospital inpatient or mental health inpatient admission) during the course of the study than patients without (OR 1.97 [95% confidence interval (CI), 1.59-2.42], P<0.01).23
    • Caregiver stress due to caring for an individual with behavioral symptoms (such as agitation) increases the chance that they will place the care recipient in a nursing home.24
  • Behavioral symptoms present a dilemma to clinicians and care providers in a long-term care setting since disruptive or dangerous behavior requires attention and resources that are not always available.25
    • Within long-term care facilities, 40-60% of Alzheimer's disease patients exhibit symptoms of agitation and aggression.26
    • In a multicenter study comprising 236 patients with mild to moderate Alzheimer's disease followed over 5 years to map the natural course of illness, the percentage of patients per year experiencing agitation/wandering was 39-57%, and the percentage per year exhibiting physical aggression was 6-22%.27
  • Patients diagnosed with Alzheimer's disease benefit from the development of a comprehensive treatment plan encompassing non-pharmocological and pharmacological interventions.28
    • Nonpharmacological treatments for behaviors associated with Alzheimer's disease include activities such as identifying and eliminating triggers, environmental simplification, and structuring daily routines.29
    • Current pharmacological treatments for agitation are associated with significant safety and tolerability trade-offs: "...as there are currently no FDA-approved pharmacological treatments for agitation in AD [Alzheimer's disease], clinicians ultimately resort to off-label use of antipsychotics, sedatives/hypnotics, anxiolytics and antidepressants in an attempt to control symptoms. Unfortunately, these treatments have limited utility given a modest efficacy that is offset by relatively poor adherence, safety and tolerability."30
  • Treatment of symptoms of agitation in patients with Alzheimer's disease reduces caregiver burden and the cost of care for the patient.31
    • Reducing the symptoms of agitation in a patient with Alzheimer's disease allows the caregiver to continue to manage the patient's activities of daily living at home.32
    • Facilitating home care can delay the move from home to a long-term care setting, which has greater costs than home care by family. Annual residential cost per patient are: $48,000 in assisted living facilities, $89,297 in a nursing home, and $100,375 in a private room in a nursing home.33

* * *

Otsuka appreciates the Advisory Council's consideration of our comments. We stand ready to assist with any of the issues raised in our letter. Please contact Thad Flood with any questions.

NOTES

  1. Alzheimer's Association 2018. Facts and Figures 2018. Retrieved from https://www.alz.org/media/Documents/facts-and-figures-2018-r.pdf.
  2. Aigbogunet al. Treatment patterns and burden of behavioral disturbances in patients with dementia in the United States: a claims database analysis. BMC Neurology 2019; 19:33.
  3. American Psychiatric Association 2016, The APA Practice Guideline.
  4. Alzheimer's Association. 2017 Alzheimer's disease facts and figures. 2017; 13:325-373
  5. Cummings et al. Agitation in cognitive disorders: International Psychogeriatric Association provisional consensus clinical and research definition, Int'l Psychogeriatrics (2015), 27:1, 7-17.
  6. Kales et al. Assessment and management of behavioral and psychological symptoms of dementia, BMJ 2015; 350:h369.
  7. Peters et al. Neuropsychiatric Symptoms as Predictors of Progression to Severe Alzheimer's Dementia and Death: The Cache County Dementia Progression Study, Am J Psychiatry 2015; 172:460-465.
  8. Scarmeas et al. Disruptive Behavior as a Predictor in Alzheimer Disease, Arch Neurol. 2007 December; 64(12): 1755-1761.
  9. Wilcock et al. Memantine for Agitation/Aggression and Psychosis in Moderately Severe to Severe Alzheimer's Disease: A Pooled Analysis of 3 Studies, J Clin Psychiatry 2008; 69:341-348.
  10. Banerjee et al. Quality of life in dementia: more than just cognition. An analysis of associations with quality of life in dementia, Neurol Neurosurg Psychiatry 2006;77:146-148.
  11. Arbus et al. Incidence and Predictive Factors of Depressive Symptoms in Alzheimer's Disease: The Real.FR Study, JNHA 2011; Vol. 15.
  12. Watts et al. (July, 2016) Neuropsychiatric Symptoms are a Barrier to Engegement in Physical Activity. Alzheimer's Association International Conference, Toronto.
  13. Lyketsos et al. Neuropsychiatric symptoms in Alzheimer's disease, Alzheimers Dement. 2011; 7(5): 532-539.
  14. Ballard et al. Agitation and aggression in people with Alzheimer's disease, Curr Opin Psychiatry 2013, 26:252-259.
  15. Alzheimer's Association 2015. Fact and Figures 2015. Retrieved from https://www.alz.org/media/Documents/2015FactsAndFigures.pdf.
  16. Pinquart et al. Associations of Stressors and Uplifts of Caregiving with Caregiver Burden and Depressive Mood: A Meta-Analysis, Journal of Gerontology: Psychological Sciences 2003, Vol. 58B, No. 2, 112-128.
  17. Schulz et al. Psychiatric and Physical Morbidity Effects of Dementia Caregiving: Prevalence, Correlates, and Causes, Gerontologist (1995) Vol. 35, No.6, 771-791.
  18. Kales et al. 2015
  19. Brodaty et al. Family caregivers of people with dementia, Dialogues Clin Neurosci. 2009; 11:217-228.
  20. Kales et al. 2015
  21. Blake et al. (March, 2002) Optimal Management of Psychosis & Agitation in the Elderly, Medscape. Retrieved 1/5/2017 from: http://www.medscape.org/viewarticle/429889.
  22. Gaugler et al. Predictors of Nursing Home Admission for Person with Dementia, Med Care 2009;47: 191-198.
  23. Knapp et al. Predictors of care home and hospital admissions and their costs for older people with Alzheimer's disease: findings from a large London case register, BMJ Open 2016; 6:e013591.
  24. Yaffe et al. Patient and Caregiver Characteristics and Nursing Home Placement in Patients with Dementia, JAMA April 2002; Vol. 287, No. 16.
  25. Greenblatt et al. Use of Antipsychotics for the Treatment of Behavioral Symptoms of Dementia, J Clin Pharmacology 2016, 56(9) 1048-1057.
  26. Gauthier et al. Management of behavioral problems in Alzheimer's disease, Int'l Psychogeriatrics (2010); 22:1, 346-372.
  27. Holtzer et al. Psychopathological Features in Alzheimer's Disease: Course and Relationship with Cognitive Status, JAGS 51:953-960, 2003.
  28. American Psychiatric Association 2016, The APA Practice Guideline on the Use of Antipsychotics to Treat Agitation or Psychosis in Patients with Dementia. Retrieved from https://psychiatryonline.org/doi/pdf/10.1176/appi.books.9780890426807.
  29. Gitlin et al. Managing Behavioral Symptoms in Dementia Using Nonpharmacologic Approaches: An Overview, JAMA. 2012 Nov 21; 308(19): 2020-2029.
  30. Antonsdottir et al. Advancements in treatment of agitation in Alzheimer's disease, Expert Opin. Pharmacother. (2015) 16(11):1649-1656.
  31. Hoe et al. Caring for relatives with agitation at home: A qualitative study of positive coping strategies. BJPsych Open (2017), 3(1), 34-40.
  32. Knapp et al. 2016.
  33. Gemworth Financial 2019. Cost of Care Survey 2018. Retrieved from https://www.genworth.com/aging-and-you/finances/cost-of-care.html.

J. Ransdell  |  04-24-2019

Thank you for the opportunity to address the Council. I am the mother of a 44-year-old gentleman who has Down syndrome, autism and Alzheimer's.

For several years I have co-facilitated the NTG national online support group and administered a Facebook support group for families who love someone with Down syndrome and Alzheimer's disease. My comments today come from conversations we have had in the past couple of months.

In the middle of February, a sibling posted on the Facebook group page about her frustration trying to find out-of-home care for her brother who is requiring more assistance. Paula, her sister Becky, and others have given me permission to share their stories.

From Paula & Becky, siblings to Matt:

"Matt is 46-year-old man who has Down's Syndrome (Trisomy 21). About 8-10 years ago he started exhibiting signs of changes. He seemed to be growing older. He wanted to "retire" from his workshop. He was less social. He began interacting verbally and physically with "people" only he could see. Sometime around the fall of 2012 Matt received a confirmed diagnosis of Dementia, likely early Alzheimer's, that was tacked on to the existing diagnosis of Intellectual Developmental Disability (IDD) he already carried. The problem now is that the healthcare system, is not ready for Matt. They aren't ready for Dementia in Down's (sic) Syndrome.

"Currently Matt is having an exacerbation of psychosis. His meds have been adjusted. Melatonin was added for sleep. He sleeps better, but he hasn't had relief from the psychosis and has begun elopement. Currently there is about 12 inches of snow on the ground. The temperature dips into the single digits at night and not above freezing during the day. When Matt elopes, he is found walking in shorts and sleeveless shirt. Sometimes he gets a coat but does not fasten it up. He does not get gloves or a hat. He wears tennis shoes but has gone out without shoes. He walks looking for Paula's car. He runs into the street without looking when he is pursued by staff. He has been found sitting in unlocked cars waiting (for) her. (It is against fire code in his residence to keep the doors locked although they are now alarmed).

"Paula would like to move Matt to a skilled care facility w/locked doors and specially trained staff. Why not? Because his primary diagnosis is IDD and Dementia is secondary. Those lovely places only care for patients with primary Alzheimer's & Dementia, or Parkinson's & Dementia, etc. WHAAA? Yep, they can't/won't take him because legally they can't keep a patient with IDD in a facility with more than 8 beds. What about the places for people with IDD? They aren't equipped or trained for Dementia/Alzheimer's. Really. There is a place Matt could go for a behavior analysis. It is a locked facility with highly trained staff where they would cease all medications and observe him then add medicine back one at a time to assess effectiveness and hopefully provide him with some relief of the psychosis and he could return to his residence safely, or they would definitively say the dementia is the primary diagnosis and he could be placed in a safer home. It is full, and he is on a waiting list. He could possibly get in sooner if he was in crisis.

"Last Thursday (2/14/19) Matt was in crisis with psychosis and attempted elopement. He left his group home, convinced he was escaping from being held hostage, ill-equipped for the weather. When staff members and housemates attempted to get him back inside to safety, he became physically aggressive. This crisis, although unfortunate, was timely because there are measures in place for crisis intervention situations like this that could place Matt exactly where we needed him to be for re-evaluation of his needs and diagnosis. Paula was meeting with her dementia caregiver support group when she got the call and there were professionals on hand to start this intervention.

"Specifically, there are two legal provisions in Wisconsin called Chapter 51 and Chapter 55. Under the statues the county board designates who can enact these provisions. For Monroe County it is the Sheriff's Department and the Health Dept/Adult Protective Services. The appropriate calls were made to activate this crisis intervention system, and no one would take the ball and run with it. NO ONE! They passed the ball from one agency to another. Adult Protective Services (APS) said the Sheriff's Department does that. The Sheriff's Department said to call APS because they hadn't done that for years.

"So now we must allow another unsafe situation--a crisis. Basically, the alarms will be shut off and he will be allowed to leave his home, maybe with a coat or maybe not, probably with shoes, but no hat or gloves, in shorts in single digit temperatures, risking frostbite or other injury. Then 911 will be called and hopefully the designated entities will execute the plan the statutes dictate. We are waiting for an appointment with another healthcare provider qualified to assess a patient with Down's Syndrome and Dementia, but it may take months to get into that doctor which is not soon enough to help with this elopement issue in the dead of winter.

Paula wanted to just take him home with her Thursday and wait for medical intervention, but once he is in a safe environment it could be months before they get help. It will only be weeks before Matt becomes agitated with her home and begins elopement there. Paula lives in the country and the risk of him getting horribly lost there is much greater. It is our intention to start unraveling the tangled web of bureaucracy that is jeopardizing the care and safety of people with an Intellectual Developmental Disability and Dementia. It is a brave choice she makes that contradicts everything she has ever done for Matt. It is a choice none of us ever thought she would have to make. It will hopefully awaken the health care policy makers to the realization that there is much work to be done to ensure the safe and seamless continuity of care for people like Matt. Please, keep him in your prayers and share his story. Hopefully someone has an answer that gets us to the finish line swiftly and safely." Paula and Becky

Paula and Becky provide one example of the barriers faced by families who have loved ones with Down syndrome and an additional diagnosis of Alzheimer's. Several other family members commented that they had also hit brick walls when seeking support outside the home. Studies show that people with Down syndrome face accelerated aging and thus in their 40s and 50s have health care needs more closely resembling that of people already in their 60s and 70s.

Here are some quotes from other families:

  • "When I started calling around to get respite care for a week, I was told it would have to be short term nursing home facility in our area, so when I called about those, I was told they only accommodate for those over 65." Cathy
  • "The group home staff are not trained, and our ERs have no idea how to help my son...I truly believe that our world was never prepared for their aging process, and still isn't. Our loved ones seem to be the forgotten population!!" Joann
  • "So far though, I am beginning to feel every resource or suggestion with every good intention is just a band aid not really addressing the heart of the problem -- adequate health care and placement for Connie!!! So, unless you can quit your job or work like a dog working full time while patching care for your loved one there isn't anything out there suitable as your loved one declines." Mary
  • "I am attending a HUGE event today...It is an all-encompassing conference regarding dementia and Alzheimer's. Except...for those with DS (Down syndrome). So once again, I am left floundering for connections for my sister. I am now armed with brochures and business cards, free lip balm, chocolates, and chip clips with the names of all these agencies that cannot help me." Peg
  • "It is sad that our social workers, nurses, doctors, politicians, CBRF (Community Based Residential Facility) owners/caregivers, administrators at nursing homes and hospitals continue to keep our loved ones on this roller coaster of assistance that is either misleading, inappropriate, inadequate care available to our loved ones with DS/Alzheimer's! Most memory care don't accept Alzheimer's patients with a disability. Most won't take straight Medicaid. Most memory care facilities lack staff that are trained to care for someone with DS and Alzheimer's." Mary
  • "I was sitting next to my sister waiting for a bed in the ED (Emergency Department) when I received a phone call from the hospital. ...it was a doctor; he wanted to discuss my sister's diagnosis and plan of care. You tell me how a physician can call me when he hasn't even physically seen or assessed my sister since I was with her the whole time. ...he apologetically laughed and said he didn't know family was with her and it isn't commonplace. ...if no family is present that justifies not treating someone with a disability just as you would anyone else? Is that why the CBRF don't like it when family are around in the home too?" Mary
  • "My experience has been that seeking emergency care with doctors that see his Downs first, develop an attitude of hurry up and treat and send you on your way attitude. He has had dozens of hospitalizations during his life. Healing comes from proper diagnosis, caring medical professionals, and acknowledgement that parents are some of the best resource to develop a treatment plan. Our dear special children are people first who have many challenges to face and overcome and move forward. Caring medical and social service personnel can lighten this load or add to it. Parents know our children best and need to be listened to." Judith
  • "My son, Matthew who has Alzheimer's has become very combative. After a 911 call, he was taken to the hospital and sedated with Seroquel. Then the hospital told us that they couldn't keep him because he didn't have a medical problem. We call the local Regional Center and requested emergency placement until we could develop a plan. We were told that they couldn't place him because he was a danger. We were left on our own to figure this out, and I did. I found a good Memory Care facility that would take Matthew. But now I'm facing the issue of coming up with about $6,000.00 because we did the placement and not Regional Center. He is still a little aggressive mostly very loud and yelling, and I don't feel that I can bring him home yet. He has lived at home all of his 47 years and this is really difficult for all of us, and I feel "abandoned" by the system that is supposed to be there to provide assistance. At a loss as to what to do." Susan
  • "Today, for the SECOND time, I contacted the Alzheimer's Association administrator & pretty much begged them to open a forum for Caregivers of Aging Down Syndrome. They came back, AGAIN, & thanked me & pretty much said they didn't think there was a need for that type of forum. It flabbergasts me when even the Alzheimer's Association doesn't understand or see the need." Pam

I ask why it is the families I have come to know -- in various parts of the country -- have such similar stories.

I know that my friend and colleague, Mary Hogan has spoken to this Advisory Council for many years about the exclusion of people with Down syndrome and Alzheimer's in many aspects of research and community care. I am left wondering if we are being heard. From 1998 to 2003, I worked for the State of Florida in the central office of the Florida Developmental Disabilities Program. During the four and one-half years I was there my goal was to bring a family voice to the decisions that were being made -- decisions that had direct impact on people like my son. I left feeling like my only accomplishment was a bloodied head from the wall that seemed to be firmly in place. When I hear these stories from families around the country, it seems nothing has changed.

I hear from parents and siblings who care deeply about family members with Down syndrome as they are treated differently, given less than equal care in the medical field and are unable to access community services that their neighbor without disability can obtain. No one should have to spend an entire lifetime in a fight for every service they deserve, every service they need. It is wrong and I implore this group to help us take steps to end this disparity. I strongly urge you to continue to push for full inclusion of people with Down syndrome and Alzheimer's in all federally funded community programs and research.

Photo of Matt Ransdell. Photo of Paula and Becky's brother Matt. Photo of Cathy's daughter. Photo of Mary's sister, Connie. Photo of Pam's sister Deb.
My amazing son Matt Paula's and Becky's brother Matt Cathy's daughter, Shelby holding her new niece with Down syndrome Mary's sister, Connie, with her niece Pam's sister Deb

D. Blackwelder  |  04-21-2019

Hello my name is Diana Blackwelder, I am 57 years old and I was diagnosed with Younger Onset Alzheimer's Disease in 2017. I thank you for the opportunity to provide input regarding this session's focus topic of person centered planning and implementation of care plans for people living with cognitive symptoms. After all, person centered planning should begin with input from the person(s). As always, I invite you reach out to me and my peers also living with various forms of dementia for further discussion as two minutes is insufficient to go into much detail regarding this very important subject.

I am single, live alone, and before Alzheimer's robbed me of my professional career, I performed complex IT systems integration and software security engineering. Now I focus on modifying my living environment and processes to best support myself and my changing cognitive abilities. I desire to remain as independent and self-sufficient for as long as possible. I have conveyed to my POA person that I refuse to become a resident in any form of memory care facility. I choose not to be locked away with my only interaction being those decades my senior in advanced stages of dementia and under-paid and inadequately trained staff. America treats prisoners more humanely. Fortunately, I have the financial wherewithal and a POA person required to support this desire not to be locked away, deprived privacy and independence and choice and likely drugged into compliance with little or no intellectually appropriate stimulation or access to large greenspaces, sunshine and fresh air.

My 2 years of experience living with dementia since diagnosis and performing extensive research and learning about dementia and services at the local, national and world level has shown me that our focus on researching a cure and providing respite & education for caregivers serves to prove that the stigma that those with dementia lose their intelligence and can't do anything for themselves without supervision persists. This has persisted far too long. I am here to dispel the stigmas about Alzheimer's by example. We need to be empowered to maximize and extend our self-sufficiency for as long as possible even if that increases risk to us. None of us live forever. We want and need to thrive not merely exist. Therefore, care plans must include education, peer and professional led support groups and appropriate activities for the person living with the dementia. So many support groups either exist solely for the caregivers or if they include an ancillary group for the caregiver to "drop off" the person living with the disease, those groups merely provide babysitting services with at best activities better suited for children than intelligent adults with memory issues.

I feel like I need to repeat myself. We do not lose our intelligence and even as we forget some of our life and professional experiences, those experiences have served to shape who we are and that doesn't fade away. What fades away is our ability to communicate with language. What fades away are nerve impulses that help us control our bowels and other bodily functions like swallowing. What fades away are our ability to juggle in super short term conscious memory all the information that helps us process logical thought. Our feelings, our emotions, and our intelligence, all remain intact so care planning needs to leverage and respect these things. When caregivers see our moods changing it is more likely the result of our environment and the impacts to us than the direct result of a disease process. I already am deeply stressed by our normal public environment and must control my exposure. If I lose that ability to control the exposure, I expect I like others in the later stages of dementia will become agitated due to the frustration of not being able to control my environment.

Being single with no family support system, and this not being unique; I strongly advocate that care plans must consider leveraging nontraditional support systems. Some starting points are in existence today but are not leveraged or included in care plans. They include Villages [https://www.aarp.org/home-garden/livable-communities/info-04-2011/villages-real-social-network.html] and organizations like Dementia Action Alliance [https://daanow.org/our-mission/] and Dementia Alliance International [https://www.dementiaallianceinternational.org/] that leverage grass roots efforts of community helping community. Villages do this on a micro level in small neighborhoods [https://dcv.clubexpress.com/content.aspx?page_id=22&club_id=161481&module_id=160518], DAA does this by integrating those living with dementia and professional experts working together to implement virtual education and support and hosting an education and awareness dementia conference [https://daanow.org/conferences/] (this June in Atlanta) and Dementia Mentors [https://www.dementiamentors.org/] where the Mentors are trained mentors also living with dementia for example. DAI works on a global scale also virtually through virtual support groups by and for people living with dementia as well as advocacy through the World Health Organization and other agencies worldwide. These grass roots organizations need your recognition and support and to be included as tools to leverage when implementing care plans.

In my written submission, I have also included informative follow up to my January public comment and information of relevant activities currently underway in congress (See below)

ADDITIONAL INFORMATION

As follow up on my January comments about the Smithsonian See Me and National Gallery of Art Just Us Programs for people living with dementia, I am pleased to report that both of these programs have restarted and that the See Me program has recently expanded to include not The American History Museum in addition to the Smithsonian American Art, Portrait Gallery, African Art, and Freer Museums. These are programs that respect our intelligence and recognize we have a cognitive disability and many of us advanced age as they create a physical, emotional and communicative environment that accommodates these disabilities while providing us varied opportunities to socialize, communicate and experience Art and History. I hope these programs receive your respect and support they so deservedly have and continue to earn with each program they execute.

As follow up re my comments about the DC Office of Aging, I have had meetings with many within DC Government including the Director and Executive Director for the now renamed Dept. of Aging and Community Living as well as others including the Mayor's budget director and Process Director for Health & Human Services to name a few. I have learned that almost all services offered receive at least partial funding through Grants from the Older Americans Act and it is this funding source that sets an age restriction on services that excludes all like me with Younger Onset Alzheimer's. While this is a large part of the issue with the lack of services, it isn't the only issue at hand. However, it is one that exists throughout the country and hence is very pervasive. A bill was recently introduced to congress to rectify this situation. I hope all those on this panel will proactively leverage their influence with the legislature to help this bill to pass. It is the bi-partisan Younger-Onset Alzheimer's Disease Act of 2019 [https://www.congress.gov/bill/115th-congress/house-bill/1903] HR 1903 & S 901. See Alzheimer's Association Fact Sheet at https://alzimpact.org/media/serve/id/5c9e439d96939.

As additional information regarding the implementation of care plans in the Alzheimer's Associations' 2019 Facts and Figures [https://www.alz.org/alzheimers-dementia/facts-figures], it is shown that only 16 percent of seniors even receive a cognitive exam so care planning cannot begin until the diagnosis and then only 33 percent of those with the disease actually receive a diagnosis. Therefore care planning is often started in the later stages of the disease when it is harder to get input from the person living with the disease due to diminished communication skills. Another bipartisan bill is currently before congress that is also a priority for the Alzheimer's Association [http://act.alz.org/site/PageNavigator/Advocacy_PublicPolicy/HOPEforAlzheimersAct.html] and I believe should be a priority for NAPA as well. It is the Improving HOPE for Alzheimer's Act [https://www.congress.gov/bill/116th-congress/house-bill/1873?q=%7B%22search%22%3A%5B%22hr1873%22%5D%7D&s=1&r=1] HR 1873 and S 880. A fact sheet is available at http://act.alz.org/site/DocServer/hope_for_alz_fact_sheet.pdf?docID=3021. It is focused on increasing the currently abysmal rate of care planning services even discussed by doctors when diagnosing Alzheimer's and other dementias and likely causes many doctors to withhold the diagnosis due to lack of time and resources to provide this information and support so critical to the wellbeing both mentally and physically for those with the disease and their care givers.


M. Sharp  |  04-17-2019

AFTD is deeply appreciative of how inclusive the advisory council has been of FTD and the related dementias. The recent ADRD summit at NIH last month is just one example of how NAPA has included the related dementias in the discussion of how to prepare the nation for the impact of these diseases. It is convenient to think that different types of dementia conform to the names we have given them, each with its own set of symptoms and underlying pathologies. One of the messages I took home from the summit was simply how untrue that is. In fact, most cases of dementia are pathologically mixed and multiple presenters discussed the role of TDP-43 in various forms of dementia including an entirely new disease entity called limbic-predominant age-related TDP-43 encephalopathy, or LATE.

Considering how messy dementia really is, both in life and pathologically I urge the council to consider dedicating one of the NGO seats to a representative from an Alzheimer focused organization and the other to a group that focuses on the related dementias. It is becoming clearer that the challenges of dementia must be met with multiple strategies and there are many more dementia advocacy organizations that represent the ADRD community that would add a valuable perspective to the advisory council.


MARCH 2019 COMMENTS

D. Reyes  |  03-04-2019

I am attending Texas Tech for my Master's in administration. I am currently working on a paper and it is on Alzheimer's Disease. I picked this topic because I did my volunteer hours at a Alzheimer's facility. I have 5 questions that I would need answered, I will put them in the email, and would greatly appreciate your help with my assignment. Thank you for your time.

  1. Do you feel that there is enough research being done on Alzheimer's disease?
  2. Do you feel that the caretakers of Alzheimer's patients are getting any help from the community, county or government?
  3. Do you feel that enough education on early diagnosis for Alzheimer's is being done?
  4. What are the benefits of an adult day care type services for a Alzheimer Patient? And is government assistance or other types of assistance offered to help cover the costs?
  5. What is your thoughts on how to make sure we target the populations that are mostly affected by Alzheimer's, which are women, African Americans, Hispanics, and people living in rural areas, to make sure they know their lifestyle can increase their risk of getting Alzheimer's disease?

C. James  |  03-19-2019

I wholly endorse the recommended 5-point plan for the National Alzheimer's Project Act, however, I feel that it necessary to address this plan using a Posthumanist approach to dementia care. Our current social policies view dementia care options with a Humanist lens, but gerontology has recently begun to take on an increasingly post-humanist approach. The former holds an outdated and limited definition of what an autonomous older adult can be, while the latter expands that definition in a way that takes into consideration our increasingly technologically progressive society. Current research is making headway in biotechnological advancements that could extend the ability to age in place with dementia safely and comfortably. Such assistive technology can allow individuals with Alzheimer's and Alzheimer's related dementia to live fuller, more independent lives, without the increasing and extensive cost of both formal and informal caregiving. Other countries have already begun to explore these possibilities. Consider the following resources:

Currently, dementia has no treatment, no cure, no preventative care, and no way to slow it down (CDC, 2018). However, current technology does exist that can improve the quality of lives of these individuals. As persons with dementia begin to lose their autonomy and ability to reason, assistive technology and human enhancement can be key in maintaining their personhood and decision-making potential. I hope that these considerations will be kept in mind in the revision of the NAPA moving forward.


JANUARY 2019 COMMENTS

M. Ellenbogen  |  01-25-2019

Please read this at the meeting. Thanks

"Stigma and discrimination against dementia is more disabling than the illness itself. And you folks need to change that by making the awareness needed to help us. Its time for change already."

ANSWER:

Per the meeting announcement, comments for the meeting had to be sent in by COB January 22. I will share you comment with the Council and include it online.

FOLLOW-UP:

This is exactly why I ask to be able to speak on a conference call. It takes me so long to form my thoughts and sentences and then I need someone to check them out which is not always easy. I have not made comments for al long time and was hoping to say even more but I had to wait for your Agenda which did not come out till Wednesday, January 23, 2019 3:50 PM. I need to digest that so I know what I many need to say. I also have bad days and good days so I am not always capable of even thinking to do this but I do give it 110 presents.

It really saddens me to see your reply from an organization that is supposed to help people with dementia that just don't ever seem to really care for them to make any kind of exception under the disability laws. Sham on you for making people think you really want to help people like me.

I do hope you reconsider my reading as it takes so little time.

And by the way I started to reply back to you the moment you sent this to me but it has taken me this long the be able to do that. I hope you are never disabled like this to feel like you are useless because of the way others make you feel.

I would also like my reply to be added to your public record. I am so confused these days that I don't even know what to do anymore but I am not giving up because of people like you.

FOLLOW-UP:

I would just like to say that I am very disappointed that you could not take 20 seconds to read my comment at the public comments section today. While you have a 2-minute rule to speak most spoke over 5 minutes. It seems that your regulations only apply to me when I speak.

I truly can not understand why you would not make such a simple accommodation.


D. Blackwelder  |  01-23-2019

Hello my name is Diana Blackwelder, I am 57 years old and I was diagnosed with Younger Onset Alzheimer's Disease in 2017. I would like to thank you for the opportunity to provide suggestions for ways to facilitate those of us on the Alzheimer's journey to live as independently and fully as possible based on my lived experience during the early stage of the disease. The points I will raise are what I feel are most important and relevant to this panel today. I implore you to reach out to me afterwards for further discussion as addressing these items are achievable and should yield the greatest return on investment.

For perspective, I am single, live alone, and before Alzheimer's robbed me of my professional career, I performed complex IT systems integration and software security engineering. Leveraging technology that is already in the mainstream helps significantly with my ability to remain independent, defer hiring assistance with household and financial responsibilities and also to assist with daily cognitive therapy exercises. Not everyone has my background though so providing information and assistance on how to do this would be so valuable. I and I know others that would be willing to help with this.

I have secured the counsel of an integrative/ functional medicine doctor to evaluate and modify my health in a comprehensive and balanced fashion. We have been balancing nutrition, hormones, prescriptions, supplements, exercise, meditation, speech / cognitive therapy. These are non-covered costs and requiring me to fund through my retirement savings and. These testing, supply and medical and compounded prescription costs do not apply to the maximum out of pocket limits either. This care not only maximizes my quality of life but most importantly delays my need for paid assistance with activities of daily living, or other home health care or adult day care types of services. As the saying goes, an ounce of prevention is worth a pound of cure.

On a more local note, a very beneficial service I had been availing myself of through the National Gallery of Art and Smithsonians called respectively Just Us and See Me programs for people with dementia afforded me the opportunity to remain social, served as therapy for the Alzheimer's related Aphasia, and provided cognitive stimulation in a safe and supportive environment that accommodated my disability. Unfortunately, the US Government Shutdown has indefinitely terminated this most valuable service to those of us living with dementia.

Finally, I would like to advise this comprehensive panel that services for Alzheimer's provided by the DC Office of Aging (and likely many other municipalities) are not available to me as I do not meet their age restriction. An age restriction that is arbitrary. Washington DC has no support services or support groups either free or for fee available for those of us living with dementia. There are services for the care givers but none to help the disabled person to maximize their quality of life and independence. If this was available it would directly reduce the burden on care givers.


M. Hogan  |  1-23-2019

Thank you for the opportunity to make this brief statement. On November 12, 2018 I was able to attend the Open Meeting of the Committee on Care Interventions for Individuals with Dementia and Their Caregivers at the National Academy of Science. The day's discussion was most interesting as the charge of shaping the draft of the systematic key questions took place.

During the afternoon session, Mary Radnofsky, Dementia Rights Advocate, had an opportunity to speak. Her comments have prompted much reflection on my part since then. Ms. Radnofsky spoke of Human Rights issues for those with dementia and the discrimination that can accompany a diagnosis. In the context of the day's discussion she noted the importance of a systematic review that was not only focused on care interventions but on support systems and accommodations that make life worth living for each person from the time of diagnosis until end of life. For people with dementia, human rights translate into access to community, accommodations, support, health and care from early symptoms to end of life.

All too often, people with dementia experience discrimination and treatment that contravenes their human rights. They are subjected to bias, ageism, stigma and discrimination. Poor care and limited support can breach the rights of people with dementia and their care partners. They can be treated in an inhuman or degrading way, be socially isolated, experience a loss of the right to respect, loss of the right to privacy, have a diminished quality of life and seem to lose the right to freedom and the power of choice.

After almost eight years since NAPA was signed into legislation, there currently remains an unacceptable variation in the quality of formal care and support provided to people with dementia and their care partners. This variation in support and care contributes to diminished human rights, significant burden on the person with the diagnosis and as well as burden on their care partners.

While in Scotland for the ID and Dementia Summit a little over two years ago we collectively spoke of human rights issues. At the same Summit, Alzheimer's Scotland presented in detail their care practices. Though Scotland is a very small country with Universal Health Care, there often is much to be learned from smaller countries that are able to implement creative practices.

Their care paradigm includes a defined one-year post diagnostic support system. There is evidence that high quality post diagnostic support, provided over an extended period, is essential in order to equip people living with dementia, their families and care partners with the tools, connections, resources and plans they need to live as well as possible with dementia and prepare for the future.

What follows is a defined Community Based Support during the moderate to severe stages of dementia. This model recognizes that excess disability is created when people with dementia do not receive appropriate care and support. Without the right care and support, there is a gap between how people actually function and how they could potentially function. The model is designed to provide each person with the best possible support so that they are able to live in their own home as long as possible.

The End of Life Pillar introduces an Advanced Dementia Specialist Team to provide optimum care and promote the wellbeing and quality of life of both the person with advanced dementia and those closest to them. It also implements essential support to care homes and those providing day-to-day care.

The provision of essential post diagnostic support, diminishment of excess disability through appropriate care and support and the promotion of well being until end of life may ensure that human rights and quality of life are maintained despite the presence of life limiting neurodegenerative diseases.

Though a myriad of organizations and institutions across the country continue to work hard to remedy the challenges faced by individuals with dementia and their care partners, the provision of support often remains fragmented across many communities. After 8+ years at this table we can and must more rapidly translate our ongoing discussion into meaningful action across all populations. Embracing and systematically implementing successful paradigms of care begets success.


L. Gerdner  |  01-22-2019

I have an article attached that I think would be of interest to you and your readers. Feel free to post if you wish.

ATTACHMENT:

Evidence-Based Guideline: Individualized Music in Persons with Dementia [Available as a separate link: https://www.medwinpublishers.com/ARTOA/ARTOA16000104.pdf]


A. Leah  |  01-22-2019

I'm am currently residing in Massachusetts! I'm interested in this study!

M. Sharp  |  01-22-2019

Hello and thank you once again for this opportunity to provide input from AFTD. My name is Matt Sharp and I am the Program Manager at AFTD. I want to thank the Research Subcommittee for this morning's presentations and for taking on the subject of non-pharmacological interventions and maximizing the quality of life for people living with dementia. Without any approved drugs or medical treatments for FTD, behavioral and environmental interventions are critical tools for managing the symptoms of the disease. Maximizing quality of life is an integral part of AFTD's mission and I would like to share some information on a couple of relatively new resources we have for health professionals and people living with FTD.

First, we are very excited to announce that our inaugural non-pharmacological Therapies & Tools Pilot Grant was awarded to Lauren Massimo, Assistant Professor at the University of Pennsylvania School of Nursing. Dr. Massimo's will work with an experienced application developer to create a mobile app as an individualized intervention for apathy. The app will be designed to increase motivation, stimulate initiation of self-care and support the planning and carrying out of activities of daily living. Dr. Massimo will then carry out a 3-month pilot study of the app to evaluate its impact on apathy, activity levels, psychological functioning, cognition, quality of life, and caregiver burden. Apathy is one of the most disabling symptoms in FTD. It is estimated to occur in over 90% of cases of behavioral variant FTD and contributes significantly to caregiver burden. AFTD is proud to be able to support Dr. Massimo's work to develop a technological tool to address this common symptom of FTD and other types of dementia.

AFTD will be posting the RFP for this years non-pharmacological pilot grant soon and I am happy to provide more details to anyone who is interested.

AFTD has also added a 3rd type of grant to our Comstock Grant Program. For about a decade, the Comstock Program has offered short-term respite grants to FTD care-partners and travel grants to help people living with FTD and their family members cover the cost of traveling to an FTD education event. Last year we piloted a Quality of Life Grant for people living with FTD and awarded twenty $500 visa gift cards to qualified applicants. The grant is meant for people living with FTD but we accepted applications from care-partners if the person with FTD could not complete the application on their own. While we encouraged people to use the funds on costs directly related to living with FTD, such as prescription costs and other services not covered by insurance, we also realized that once the recipient received the card they could use it however they wanted. The gift card we used, allowed us to monitor where the card was used. So, even if we couldn't restrict the use of the funds we could at least know where the money went.

After the 20 grants were spent we looked at the outcomes and decided to offer more grants this year. Through the pilot grants we learned that managing the Quality of Life Grants required more administrative effort than the other types of grants in the program. We also realize there is an inherent risk that the grant money will be misused or lost, but discovered our trust in our community to use the funds responsibly was mostly warranted and the benefit of receiving 500 unrestricted dollars far outweighed the administrative and financial costs of the grant. There are still Quality of Life Grants available this and I am happy to provide more details on how to apply.


C. Rodgers  |  01-22-2019

More than half of dementia cases are mixed dementias, most commonly Alzheimer's and vascular dementia. These are two different diseases with different symptoms, yet they co-occur so frequently, it is worth considering whether they share a key risk factor. Because brain exposure to ionizing radiation is known to produce cognitive deficits, Alzheimer's pathology (1-4) and vascular damage (5), it is time to take a good, hard look at the most common x-ray procedure undergone every day by millions of people from early childhood on: Dental x-rays.

Dental x-rays are considered so harmless that -- unlike every other medical x-ray procedure -- we do not even keep records of patient exposure. That is because the primary radiation field is bone and teeth, which are not considered radiosensitive, and the total area exposed is very small, considering the body's overall mass. Further, safety experts mainly focus on two radiation effects: cell death and cancer. Although dental x-rays have been associated with brain and thyroid cancers (6, 7), there has been a lack definitive proof that would change protocols. But are we overlooking possible long-term consequences of frequent dental x-rays, such as Alzheimer's and other neurodegenerative diseases? We have lots of clues -- it's a matter of how they fit together.

Although the target in dental x-rays is bones and teeth, the white areas in the image show where radiation did not penetrate, instead scattering. Scatter radiation is a known hazard for x-ray technicians (8), which is why they leave the room before pressing the button. It is also a risk for patients. Lead aprons and thyroid collars prevent some radiation exposure, but the brain has no such shielding (6-8).

Ionizing radiation damages endothelial cells (5), which line the vascular system and comprise the blood-brain barrier. A study published this month shows that "leaky" capillaries are a good indicator of cognitive decline even in the absence of Alzheimer's pathology, and may be an early biomarker for Alzheimer's disease (9). Leaky capillaries would release blood, which contains iron, into the brain's extracellular environment. This would explain the presence of tau and amyloid precursor proteins, which are both involved in iron regulation (10,11).

There also is evidence that motor-neuron diseases, such as Parkinson's, are associated with radiation exposure (4), although further research is needed. Genetic predispositions certainly play a part in neurodegenerative diseases, yet may not always induce dementia in the absence of head exposure to ionizing radiation.

For those who are heavily invested in finding pharmaceutical solutions to dementia, I am sorry to say that there may not be a magic bullet. The means of preventing dementia may be in the hands of dentists -- and of their patients, who regularly agree to routine x-rays that may have devastating consequences down the line.

REFERENCES

  1. Begum N, Wang B, Mori M, Vares G. Does ionizing radiation influence Alzheimer's disease risk? J Radiat Res. 2012 Nov;53(6):815-22. Epub 2012 Aug 7.
  2. Kempf SJ, Azimzadeh O, Atkinson MJ, Tapio S. Long-term effects of ionising radiation on the brain: cause for concern? Radiat Environ Biophys. 2013 Mar;52(1):5-16. Epub 2012 Oct 26.
  3. Cherry JD, Liu B, Frost JL, Lemere CA, Williams JP, Olschowka JA, O'Banion MK. Galactic cosmic radiation leads to cognitive impairment and increased abeta plaque accumulation in a mouse model of Alzheimer's disease. PLoS One. 2012 7(12):e53275. Epub 2012 Dec 31.
  4. Sharma NK, Sharma R, Mathur D, Sharad S, Minhas G, Bhatia K, Anand A, Ghosh SP. Role of Ionizing Radiation in Neurodegenerative Diseases. Front Aging Neurosci. 2018 May 14;10:134. eCollection 2018.
  5. Baselet B, Rombouts C, Benotmane AM, Baatout S, Aerts A. Cardiovascular diseases related to ionizing radiation: The risk of low-dose exposure (Review). Int J Mol Med. 2016 Dec;38(6):1623-1641. Epub 2016 Oct 17.
  6. Lin MC, Lee CF, Lin CL, Wu YC, Wang HE, Chen CL, Sung FC, Kao CH. Dental diagnostic X-ray exposure and risk of benign and malignant brain tumors Ann Oncol. 2013 Jun;24(6):1675-9. Epub 2013 Feb 13.
  7. Hellén-Halme K, Nilsson M. The Effects on Absorbed Dose Distribution in Intraoral X-ray Imaging When Using Tube Voltagesof 60 and 70 kV for Bitewing Imaging. J Oral Maxillofac Res. 2013 Oct 1;4(3):e2 eCollection 2013.
  8. Holroyd J Measurement of scattered and transmitted x-rays from intra-oral and panoramic dental x-ray equipment. J Radiol Prot. 2018 Jun;38(2):793-806. Epub 2018 Apr 10.
  9. Nation DA, Sweeney MD1, Montagne A, Sagare AP, D'Orazio LM, Pachicano M, Sepehrband F, Nelson AR, Buennagel DP, Harrington MG, Benzinger TLS, Fagan AM, Ringman JM, Schneider LS, Morris JC8, Chui HC, Law M, Toga AW, Zlokovic BV. Blood-brain barrier breakdown is an early biomarker of human cognitive dysfunction. Nat Med. 2019 Jan 14. doi: 10.1038/s41591-018-0297-y. Epub ahead of print.
  10. Rao SS, Adlard PA. Untangling tau and iron: exploring the interaction between iron and tau in neurodegeneration, Front Mol Neurosci. 2018 Aug 17;11:276
  11. Rogers JT, Venkataramani V, Washburn C, Liu Y, Tummala V, Jiang H, Smith A, Cahill CM. A role for amyloid precursor protein translation to restore iron homeostasis and ameliorate lead (Pb) neurotoxicity. J Neurochem. 2016 Aug;138(3):479-94.

COMMENT SUPPLEMENT

What can be done to improve dental x-ray safety?

If frequent, lifelong head exposure to ionizing radiation from dental x-rays is a risk factor in developing dementia, it is critical to review industry safety options.

There are many studies regarding dental x-ray safety. What follows is a small sample from researchers around the world to highlight some of the many issues at stake, such as the number of x-rays taken (and how fee-for-service results in more radiation exposure), film type and speed, collimator shape, tube voltage, pediatric vs. adult settings and more. Other issues that need to be taken into consideration are the fact that women's brains are more radiosensitive than male brains and children are much more radiosensitive than adults. While no one wants to lower dental health standards, clearly the risk-vs.-benefit regarding dental x-ray practices needs to be reevaluated. Once that has been accomplished, it will take extraordinary measures and leadership to make universal changes in best practices.

  1. Chalkley M, Listl S. First do no harm - The impact of financial incentives on dental X-rays. J Health Econ. 2018 Mar;58:1-9 Epub 2017 Dec 30.
  2. Hellén-Halme K, Nilsson M. The Effects on Absorbed Dose Distribution in Intraoral X-ray Imaging When Using Tube Voltagesof 60 and 70 kV for Bitewing Imaging. J Oral Maxillofac Res. 2013 Oct 1;4(3):e2. eCollection 2013.
  3. Holroyd J Measurement of scattered and transmitted x-rays from intra-oral and panoramic dental x-ray equipment. J Radiol Prot. 2018 Jun;38(2):793-806. Epub 2018 Apr 10.
  4. Anissi HD, Geibel MA. Intraoral radiology in general dental practices - a comparison of digital and film-based X-ray systems with regard to radiation protection and dose reduction. Rofo. 2014 Aug;186(8):762-7. Epub 2014 Mar 19.
  5. Davis AT, Safi H, Maddison SM. The reduction of dose in paediatric panoramic radiography: the impact of collimator height and programme selection. Dentomaxillofac Radiol. 2015;44(2):20140223. Epub 2014 Oct 29.

M. Janicki  |  01-20-2019

I am the co-chair of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) (http://www.aadmd.org/ntg). The NTG is an affiliate of the American Academy of Developmental Medicine and Dentistry.

Today, we would like to comment on the deficiency in reliable and available specialized dementia diagnostic and post-diagnostic services for adults with intellectual disability (including those with Down syndrome) and speak to a proposal to remediate this deficiency.

Given that adults with intellectual disability are one of the 'specific populations' recognized by the Advisory Council on Alzheimer's Research, Care, and Services in the National Plan to Address Alzheimer's Disease, and that the National Institutes for Health has noted that many

  1. adults with Down syndrome, an intellectual disability, are at significant risk of dementia (mainly resulting from Alzheimer's disease),
  2. some experience symptoms of cognitive impairment earlier in life,
  3. may be subject to neglect or abuse or are at risk of institutional placement,
  4. would benefit from early screening and assessment and access to knowledgeable diagnostic services,
  5. often live with older caregivers who, or are served by provider agencies that, have difficulty finding knowledgeable clinicians who can provide accurate assessments or diagnoses, as well as post-diagnostic supports, and
  6. knowing that many such resources are difficult to access and scarce in most non-urbanized areas and that few clinicians currently are specialists in the differential diagnosis of dementia among adults with intellectual disability,

We propose that there is a need to increase the availability of intellectual disability focused dementia assessment and diagnostic resources and post-diagnostic supports across the United States. Currently, there is a serious lack of such specialized diagnostic services across the states and there is no national register of such specialists. A remedy would be to raise the awareness of the availability of such services and increase the interest of existing (or emerging) dementia diagnostic services to also be recognized as an intellectual disability specialty provider.

We note that the report on intellectual disability and dementia1 that emanated from the 2017 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers stated that early diagnosis is essential to ensure timely interventions, such as proffering medications for symptom management, establishing advance care plans, and applying psychosocial interventions for adults with intellectual disabilities. Further, the report noted the need for increased diagnostic competency among diagnosticians, more public awareness in general, and accessible information designed to raise the "index of suspicion" for caregivers of adults with intellectual disability. The report recommended with respect to screening and diagnostics, that there be increased screening for dementia, raised public and professional awareness; and more readily available diagnostic services.

To this end, the NTG and other aging and disability organizations have proposed a legislative remedy that would increase such awareness, focus attention on available and newly recognized diagnostic services, and enhance post-diagnostic supports. Consequently, we recommend that the Older Americans Act, which is up for reauthorization this year, be amended to include provisions that would increase availability of specialized diagnostic resources and increase the provision of post-diagnostic supports for this specific population.

In the current iteration of the Older Americans Act, there are several sections that contain foundational language:

  • Section 102(14) of the OAA states that the term ''disease prevention and health promotion services'' means--(J) information concerning diagnosis, prevention, treatment, and rehabilitation concerning age-related diseases and chronic disabling conditions, including osteoporosis, cardiovascular diseases, diabetes, and Alzheimer's disease and related disorders with neurological and organic brain dysfunction"; and Section (14)(L) "counseling regarding social services and followup health services based on any of the services described in subparagraphs (A) through (K)."
  • Section 201(e)(3)(f)(2) of the OAA states that "It shall be the duty of the Assistant Secretary, acting through the individual designated under paragraph (1), to develop objectives, priorities, and a long-term plan for supporting State and local efforts involving education about and prevention, detection, and treatment of mental disorders, including age-related dementia, depression, and Alzheimer's disease and related neurological disorders with neurological and organic brain dysfunction."
  • Section 307(a)(16)(A) of the OAA states that the State agency would require outreach efforts that will identify individuals eligible for assistance under this Act, with special emphasis on "(i) older individuals residing in rural areas; (ii) older individuals with greatest economic need (with particular attention to low-income older individuals, including low-income minority older individuals, older individuals with limited English proficiency, and older individuals residing in rural areas); (iii) older individuals with greatest social need (with particular attention to low-income older individuals, including low-income minority older individuals, older individuals with limited English proficiency, and older individuals residing in rural areas); (iv) older individuals with severe disabilities; (v) older individuals with limited English-speaking ability; and (vi) older individuals with Alzheimer's disease and related disorders with neurological and organic brain dysfunction (and the caretakers of such individuals);
  • Section 307(a)(17) of the OAA states that "The [State] plan shall provide, with respect to the needs of older individuals with severe disabilities, assurances that the State will coordinate planning, identification, assessment of needs, and service for older individuals with disabilities with particular attention to individuals with severe disabilities with the State agencies with primary responsibility for individuals with disabilities, including severe disabilities, to enhance services and develop collaborative programs, where appropriate, to meet the needs of older individuals with disabilities."

Given these requirements under the statute, it is proposed to incorporate into the Older Americans Act a provision to identify and promote use of state designated intellectual disability geriatric assessment centers, specifically designated as resources for the screening, assessment, and diagnosis of Alzheimer's disease and related disorders with neurological and organic brain dysfunction.

Specifically, the legislation would enable such centers to:

  • Have at minimum one or more clinical specialists experienced in screening, assessing, and diagnosing older adults with intellectual disability, including adults with Down syndrome, developmental disabilities, and other neurodevelopmental conditions who may be at risk of institutional placement, precocious aging, abuse or neglect, and who are at high risk of dementia or who are suspected of experiencing cognitive decline or other neurodegenerative mental or physical condition associated with aging.
  • Offer their assessment and diagnostic services to adults with intellectual disability and with those with severe disability, suspected of or affected by cognitive impairment such as Alzheimer's disease and related disorders with neurological and organic brain dysfunction, and their primary caregivers.
  • Be capable of primary screening, assessment, and diagnosis of cognitive impairment, such as Alzheimer's disease and related disorders with neurological and organic brain dysfunction, following referral from primary care or general practitioners, social care agencies, family members, community-based entities, and via self-referral.
  • Liaise with and provide consultation to social care and other community-based agencies, and referral sources, on post-diagnostic supports and enable or provide follow-along post-assessment or post-diagnostic clinical assessments.
  • Provide consultation on assessment, diagnosis, and post-diagnostic supports to primary care physicians, general practitioners, and other health providers (including neurologists, geriatricians, and psychiatrists) not located geographically proximate to the center, via Internet and other distance communication methodologies, such as telemedicine.
  • Liaise and link to the Aging and Disability Resource Centers within the state.

To support this provision, specifically, the State [aging] agency:

  • Would be tasked to identify the scope of need for such a center or centers within the State as part of its State plan requirements.
  • Would be tasked to make such designations in consultation with the state developmental disabilities authority, the state's developmental disabilities planning council, the state's Aging and Disability Resource Centers, and the state entity responsible for administering or organizing the state's plan to address Alzheimer's disease and other dementias.

A proposal for legislative language has been prepared that addresses this issue and is being circulated among organizations and associations involved in disability and aging advocacy which have an interest in dementia and are contributing specificity to changes in the next iteration of the Older Americans Act.

We ask for your support, to the extent possible, for this legislative proposal and for due consideration in otherwise addressing this need in the 2019 update of the National Plan.

NOTES:

  1. Heller, T. Scott, H.M, Janicki, M.P., and Pre-Summit Workgroup on Caregiving and Intellectual/Developmental Disabilities. (2018). Caregiving, intellectual disability, and dementia: Report of the Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities. Alzheimer's & Dementia: Translational Research & Clinical Interventions, 4(4), 272-282. DOI: https://doi.org/10.1016/j.trci.2018.06.002

S. Keller  |  01-20-2019

I am a co-chair of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) (http://www.aadmd.org/ntg). The NTG is an affiliate of the American Academy of Developmental Medicine and Dentistry (AADMD).

I am a neurologist and the chair of the Special Interest Group (SIG) on Adults with Intellectual and Developmental Disabilities within the American Academy of Neurology (AAN). The SIG was created because we recognized that there is a huge predominance of neurologic complications in this population, including epilepsy and early onset Alzheimer's disease in adults with Down syndrome. To date there are no official assessment, diagnostic, or care guidelines for these conditions and there is no standard curriculum being taught across our country in any family practice, internal medicine, neurology, psychiatry, or nursing training programs. Ironically, the only discussion on health issues relating to adults with intellectual disability is usually discussed in pediatric rotations.

Where do families and support organizations go to get diagnostic assessment and healthcare supports for those with age related decline and dementia? They go anywhere and everywhere which includes university academic centers and memory centers. We hear countless stories across the country that these centers tell them when requested to help that they do not have the expertise to help. We hear a great degree of frustration, sadness, and anger when calls for help are not answered.

We are thrilled that research is being conducted in helping to better diagnose and understand how and why Alzheimer's disease occurs in adults with Down syndrome. Maybe one day it will lead to an ability to change the trajectory of this disease, which tragically can have a horrific rapid progression leading to death in only a matter of several years. Time is not on their side for current research to help many who now are on the precipice of this disease.

The National Task Group on Intellectual Disabilities and Dementia Practices, American Academy of Developmental Medicine and Dentistry, Down Syndrome Medical Interest Group and the efforts of the Special Interest Group of Adults with Intellectual Disabilities in the American Academy of Neurology all hope to make a difference in being able to educate, train and provide further awareness of age-related decline and dementia in adults with intellectual disability. We need to start by understanding what normal age related decline is and to develop appropriate diagnostic and assessment tools which are appropriate for those individuals who may not be verbal and whose supports including aging caregivers may not be able to provide a comprehensive discussion on the nature and degree of the changes that they are noting in the one they support. We need to have Intellectual Disability and dementia Healthcare Guidelines which can then be used to help educate doctors and nurses as part of their curriculum in their training programs as well as for those practitioners who are already practicing.

All of the education and training in the world will not make a difference in improving access to quality healthcare if we can never convince and support healthcare providers to see patients who commonly present with complex developmental conditions, who may have associated challenging behaviors, who may have fragmented supports with limited detailed information about their difficulties and they may not be reimbursed fairly for the time and effort required to make a accurate and appropriate plan of care. This means fair reimbursement for their professional services especially for the many patients who may have Medicare or Medicaid as their primary healthcare insurance. There also needs to be a number of highly specialized experts in the field, including primary care as well as specialty care providers including neurology, psychiatry as well as nursing who can act as a referral center when particular questions and complications arise. Having the availability of a specialized national and state telehealth system to provide clinical expertise in intellectual disability would go far to this end.

We, through our various professional organizations, are raising the awareness of the challenges faced by adults with intellectual disability as dementia takes its toll. However, we can only do so much. A unified approach to promoting clinical acuity in this area and advocated for in the next iteration of the National Plan Update, would go far to give us the support we need and help more professional organizations to join us at the table.

Individuals with Intellectual and Developmental Disabilities have been devalued and marginalized in our society throughout history. There has been social, cultural, and civil rights changes that have led to enabling many to enjoy their lives including living longer than ever before, however, access to quality healthcare especially to aging adults remains abymsal. We all need to catch up to this growing demographic and provide the fair and necessary supports that they deserve as US citizens.


J. Ransdell  |  01-16-2019

Thank you for the opportunity to address the Council. I am the mother of a 44-year-old gentleman who has Down syndrome, autism and Alzheimer's.

When we learned that my son Matt was exhibiting signs of early stage Alzheimer's disease, I didn't know what to do. I quickly learned that most of his doctors had no idea what to tell me to expect as we moved forward on this path. Within a few months, I connected with the National Task Group on Intellectual Disability and Dementia Practices and found they were discussing the need for support for families. Because I had a long personal and career history with family support, I volunteered to take the lead on this project, and in April 2016 we hosted our first online support group meeting.

The meetings have provided a safe place for families supporting an individual with an intellectual disability (primarily Down syndrome) and Alzheimer's disease. Many of our members have no one else they can discuss their concerns with. In addition, we have an educational component in the meetings as we invite professionals to present on topics that have been identified by the group members.

We have provided support to more than 20 families, many of whom are still participating. We know there is a need for additional online support groups. As a result, we are in the process of expanding the availability of the NTG's online support groups. We are actively recruiting facilitators for new groups and are teaming up with a university center on aging to undertake a study of the impact of participation in online support groups. In April, we will be presenting this project at the National Down Syndrome Society's Second Adult Summit in Detroit. Michigan. I hope some of you might attend

As noted in the Caregiving, Intellectual Disability, and Dementia: Report of the Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities report (see attached) following the NIH Caregiving Summit, the following points were made related to intellectual disability and family/caregiver support:

  • Dementia-related caregiving in this group poses idiosyncratic challenges and manifests special demands, as caregivers need to be more alert to subtle changes in function due to the presence of lifelong impairment and confront the need to transition from routine care--on the presence of an ID--to specialty care and adapt to stage-related changes when dementia becomes evident.

  • Research dedicated to understanding the course of dementia and the impact of caregiving has in large part excluded (or not actively included) people with IDDs in their samples. A position of the working group is that inclusion of people with IDD, and their caregivers into relevant research will increase the breadth and applicability of studies and produce generalizable value as well as promote full community inclusion.

The conclusion of that report echoes the frustrations that the families we know have expressed. Repeatedly we hear how important their online support group is because no one else truly understands. Here are quotes from some of those families:

#147;I have benefited from the support group, it has been helpful to hear others who are having similar experiences. I feel if I come across a situation during the month, I know I will be able to share with the group and they will understand and provide valuable information and resources."

"No other's words brought me more peace than the words from this group as only those here truly understand how it is.

"You, the support group, Mary, and many others have helped me so much since ****'s diagnosis in January. You have given me lots of information but more importantly have talked me off the ledge and reminded me to breathe. I'm sure I'll have more times like that in the future but for now I am grounded and ready to put one foot in front of the other."

In closing, I ask today that the importance of expanding family support is recognized -- especially that focused on the unique needs of individuals with intellectual disability, such as Down syndrome, and their family caregivers, and that the continuing efforts of the NTG in this regard also be recognized and included in the 2019 update of the National Alzheimer's Plan.

I appreciate the opportunity to speak with you today and to share the efforts of the NTG to support family caregivers, and ultimately people with intellectual disability (such as Down syndrome) and dementia.

Photo of Matt Ransdell.

ATTACHMENT:

T. Heller, H.M. Scott, M.P. Janicki, and Pre-Summit Workgroup on Caregiving and Intellectual/Developmental Disabilities, Caregiving, intellectual disability, and dementia: Report of the Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities, 2018. [Available as a separate link: https://www.sciencedirect.com/science/article/pii/S2352873718300301. An unpublished version is available at: https://aspe.hhs.gov/sites/default/files/private/pdf/257461/IDD%20PreSummit.pdf]



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2018 Comments

DECEMBER 2018 COMMENTS

K. Beller  |  12-26-2018

I understand the last round of nominations for non-Federal members of the HHS Alzheimer's Advisory Council was issued in May 2017 (for 7 of the 12 non-Federal members). When will the next round of nominations be held? I appreciate your time and help.

ANSWER:

It is my understanding that we will be announcing a Request for Nominations in the Spring 2019. If you are a member of NAPA's Listserv, you will be alerted when it goes out. (If not, I can add you if you would like.)


B. Ances  |  12-19-2018

I am a physician that takes care of CJD patients.

As you know, CJD is a rapidly progressive dementia caused by prions, proteins that misfold in the brain. The discovery that a protein could be disease-causing was an important one in understanding other neurodegenerative diseases (AD, LBD, FTD). Advances in the field of CJD directly led to this discovery, which is currently being exploited to improve diagnosis (e.g., protein amplification assays like RT-QuIC) and develop treatment targets. Further discoveries about Prion Diseases could be very valuable in studying other ADRDs. We therefore need more research in CJD as it could lead to significant benefits for other diseases. I would ask that CJD be added to the list of ADRD disorders.

Many CJD researchers investigate other ADRDs because of the strong link between the diseases. There is abundant opportunity for collaboration across prion research and other ADRD research initiatives. My research focuses on both CJD and ADRD

CJD is often misdiagnosed as other ADRDs (e.g., AD, LBD, FTD). Many key advocacy groups such as the Alzheimer's Association, recognize CJD as an ADRD. We have noted that many ADRD can lead to rapidly progressive dementias.

When you meet to revisit the ADRD Milestones evaluations in March, I would suggest that incorporate Prion Disease research objectives within those milestones. This might entail adding a seventh Topic area on Prion Diseases as well as incorporating Prion Disease into the existing Topic areas/Focus areas.

Thank you for considering this important request. Please feel free to contact me with any questions.


NOVEMBER 2018 COMMENTS

J. Lyons  |  11-29-2018

Hi, All. Sorry I haven't been at the NAPA meetings this past year-I'm recovering from a stroke. I hope to be in the audience again soon! In the meantime, I have co-authored a book on Brain Health As You Age that I thought member of the advisory council would be interested in. The press release is below. Would it be possible to circulate it to members of the council? Also, my co-authors and I would be pleased to be guest presenters at a NAPA meeting.

Photo of the book cover.

Buy the Book https://www.amazon.com/Brain-Health-You-Age-Maintenance/dp/1538109166/ref=sr_1_1?ie=UTF8&qid=1540400581&sr=8-1&keywords=brain+health+as+you+age&dpID=41%252BDlD3EzTL&preST=_SY291_BO1,204,203,200_QL40_&dpSrc=srch

ATTACHMENT:

Keep Your Brain Healthy & Know What To Do if you Spot a Problem

Have you ever spent 10 minutes looking for your reading glasses, and they were on the top of your head? Or, have you walked into a room and forgotten why you went there? Where are your car keys?

What's normal aging? When should you be concerned? Is there anything you can do to maintain your brain health as you age? Are you at risk for cognitive impairment? What can you do if there's a problem?

Brain Health as You Age provides useful, achievable actions you can take to reduce your risk of brain function decline, accurate information about identifying problems, and real solutions. The authors offer useful anecdotes and scientifically validated information -- important tools in separating myth from reality. The authors separate fact from fiction to ensure that recommendations are evidence-based, practical, useful, achievable, and measurable.

Written by a world-renowned cognitive specialist, an extraordinary house call physician, and an award-winning author on eldercare issues, this book addresses both normal and abnormal decline and best practices for addressing both. Brain health, cognitive impairment, and mood disorders are serious issues. This book is an accessible starting point for understanding healthy brain aging and when to seek help. It's never too soon to start preventing cognitive decline, or understanding it once it's begun, and this book offers the perfect entry point for readers young and old.

The authors:

Dr. Steven P. Simmons (M.D.) is an extraordinary house-call physician who is passionate about bringing high quality medical care to homebound older adults. He also is medical director of select high-quality assisted living communities. He specializes in the medical aspects of aging and the practical aspects of dealing with these issues in the home.

Dr. William E. Mansbach (Ph.D.) is a world-renowned expert in the field of cognition and has published numerous articles in recognized peer-reviewed publications. His work in developing the BCAT® cognitive test system, the ENRICH® brain health program, and numerous other cognitive tools offers unmatched expertise to this book.

Jodi L. Lyons is the author of an award-winning book on eldercare, a contributor and industry advisor to Telemedicine Magazine, and an eldercare consultant who helps older adults find the care they need throughout the country. She specializes in the practical aspects of dealing with cognitive issues and caregiving.

BRAIN HEALTH AS YOU AGE includes:

  • Keeping your brain healthy as you age -- advice from experts
  • Scientifically validated exercises to promote brain health
  • Brain health -- myths vs. realities
  • Keeping caregivers healthy

For information on booking the authors for book appearances, speaking, or interviews, Contact:

President, Nine Speakers, Inc.
A Full Service Entertainment Agency
Ninespeakers@usa.net
@DaisyCatNine (our tweeting Cat)
http://www.ninespeakers.com


OCTOBER 2018 COMMENTS

S. Hoffman  |  10-24-2018

I streamed this meeting live and would love to review with our team. Is it possible that you have a recording? We're excited about the progress that we're making with our program as an alternative to AP usage in long-term care!

ANSWER:

The videos of the meeting will be available at https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services-meetings#Oct2018 by the end of this week. A Listserv announcement will be sent out when the links have been included. If you are not currently on NAPA's Listserv and would like to be included, please let me know and I will add you.


B. Bauer  |  10-22-2018

My Introduction: I am an eighty-five year old retired engineer, who is now a caretaker for my wife, who was diagnosed with MCI in October, 2001 and is currently with AD/Dementia. I have educated myself over the past eighteen years to understand Alzheimer;s disease and formulate views that are probably considered "Outside the Box". I have attached my hypothesis for PREVENTING ALZHEIMER;S DISEASE FOR MANY. It is evidenced based on published research and in my opinion bypasses a regulatory impediment currently facing intervention efficacy, namely "MEANINGFUL COGNITIVE BENEFITS". I hope you find it, not only interesting, but realistically capable of satisfying NAPA Goal No. 1. I believe it can be achieved with current amyloid interventions in clinical trial

In addition, a second short attachment provides another "OUTSIDE THE BOX" idea that I extracted from my book "ABC;s of Alzheimer's Disease, a Shared Reality by Me and My Shadow", that is currently in publication and probably available the end of this year or early next year. This attachment not only offers concepts to address the coming AD tsunami, but also offers a potential solution to the professional geriatric personnel shortage as well as attaining federal and state political support.

I not only expect you will not be wasting your precious time, but also concur with the potential these attachments offer.

ATTACHMENT #1:

THINKING "OUTSIDE THE BOX" GERIATRIC SERVICE BILL
Bruce Bauer

  1. As lifespans continue to increase, the need for geriatric physicians will be more demanding. Through government leadership, both federal and state programs should be developed for geriatric medical students, with educational incentives. Such an incentive could be a "Geriatric Service Bill" (GSB) either like the GI Bill or like the armed service academies, where a free education would be provided, but upon graduation, require a year of service for each year of schooling. The graduates could then be assigned to a state-supported, diverse, low-income population, thereby providing additional caregivers where most needed. This GSB could be for doctors, nurses, and dementia memory care specialists.
  2. An alternate GSB program could be an educational opportunity, like the military academies. Senators and Congressmen could nominate students (number to be determined). Those graduates would return to their home states to fulfill their commitments. Such a program should provide opportunities for diverse, low-income groups to advance in society as well as provide a needed service for a growing demented population.
  3. Develop state-directed, diverse, low-income, dementia memory communities. These could be state-run or licensed to nonprofit organizations. The facilities would employ committed graduates from the GSB program. Each state would create its own program structure (maybe like the VA or the Dept. of Motor Vehicles or possibly linked to the current GAP concept).
  4. This GSB concept would stimulate future planning to accommodate the expected growth in the senior population and expected dementia demands in the second half of the twenty-first century.
  5. Funding source ideas for the above could be: (a) reduced welfare demands for diverse, low-income groups taking advantage of GSB opportunities; (b) a $0.0001 tax on all entertainment events; (c) a $0.0001 tax on all stock shares transactions (10,000-share transaction would produce one dollar); or, (d) all of these.
  6. A concept that provides congress members the opportunity to participate through nomination of candidates for education instills an ownership in the concept and increases the probability of congressional support. In addition, state governments would also benefit and have greater interest in participating. An alternative could be for state political representatives to also nominate candidates. (Win-Win)

ATTACHMENT #2:

BRUCE'S HYPOTHESIS: "PREVENT ALZHEIMER'S DISEASE"
Bruce Bauer

"ASK NOT WHAT YOUR COUNTRY CAN DO FOR YOU, ASK WHAT YOU CAN DO FOR YOUR COUNTRY?
John F Kennedy -- January 20, 1961

Bruce's Hypothesis is his contribution

Bruce's Hypothesis - "Prevent Alzheimer's Diseases" is that Late Onset Alzheimer's Disease (LOAD) starts around mid-life (assume age 45 or 50 -- without symptoms), progressing with an increasing amyloid plaque (AB42) load during a 10-year period (Bruce calls Amyloidosis). With amyloid plaque continuing, the AB42 load reaches a point to trigger tau fibrils and tangles that initiates neuron loss in the Entorhinal Cortex (EC). This neuron loss continues during the next 10-year Prodromal AD (AD-P) period without symptoms. Then, during the next five years, as progression continues (tauopathy), symptoms occur and Mild Cognitive Impairment (MCI) is diagnosed. The MCI period is assumed to last for five to seven years after symptoms begin. (Figure 1 below) Finally, neuron loss progression continues for possibly a 20-year period of symptomatic AD. Each period has specific conditions that required different strategies.

SYMPTOMATIC AD
The amyloid cascade hypothesis has driven research of the symptomatic period since 1982 without success. I believe there are two compounding contributors to the symptoms in this period that currently impede success. They both involve neuron loss in the brain. Once neurons are lost, they currently cannot be re-created. The first contributor is normal aging. The second contributor begins with Tau protein fibrils and tangles that cause neuron loss in the entorhinal cortex along with the hippocampus (memory), and then proceeds to the neocortex (executive function) and throughout the brain. There are probably many contributing issues, such as metabolic and vascular anomalies, cell energy decline in the mitochondria during aging, inflammation, and immune system unknowns. Solutions to these issues are yet to be understood and will probably require decades or centuries of research. Unless an intervention receives market approval to halt the loss of neurons due to Tau proteins fibrils and tangles. realistic expectations should be that delay may be possible with aggressive lifestyle activities, and later pursuing quality care. Such an intervention might prevent the start of AD for some LOAD candidates (ApoE4 is still an uncertain influence).

MILD COGNITIVE IMPAIRMENT (MCI)
MCI became a disease stage during the first decade of the twenty-first century. It is currently defined by a Mini Mental State Exam (MMSE) score of 30 to 24. However, cognitive symptoms are initially so unnoticeable that a patient could go undetected, or remain at a score of 30, for up to five years. Even after a diagnosis, it could be five to seven years to reach a MMSE score of 24. Unfortunately, Tau neuron loss continues during this period. Strategies during this period are aggressive active lifestyle and monitor research for a successful tau intervention that could halt or slow the neuron loss (due to AD) which could be considered possible prevention or at least significant delay. However, neuron loss would continue due to aging. Prevention of amyloid plaque accumulation during this period may or may not delay continue neuron loss (Currently an unknown).

TAU NEURON LOSS
This may be the real start of Alzheimer's disease. Based on Bruce's Hypothesis "Prevent Alzheimer's Diseases", a 55 or 60-year old patient could begin Prodromal AD (AD-P) without any symptoms or knowledge that it has started. Bruce's hypothesis assumes AD-P begins to occur when amyloid plaque (AB42) load is enough to initiate fibrils and tangles of the tau protein in the entorhinal cortex (EC). Think of the EC as a computer server, passing information from the body's five senses to short term memory in the hippocampus and then back through EC to the neocortex for long term memory storage. The EC neuron loss continues during a 10-year AD-P period until MCI is detected. (ages 55 - 65 or 60 -70). These postulated periods are assumed based on both current research evidence, along with the1991 autopsy report by Braak and Braak and the 1996 autopsy report by Tereasa Gomez-Isla et. al. in which they both stated: "AD must have started many years before symptoms appeared". Can a tau intervention be found for this AD-P period to delay or prevent continued neuron losses or is it too late once the EC neuron loss starts? Strategies during this period are a focus on halting or slowing EC tau neuron loss and pursue patient diagnosis and prediction of decline progression along with identification of an acceptable biomarker, that can confirm or dispel this hypothesis.

AMYLOIDOSIS
This period begins with the first detection of amyloid plaque (AB42) and continues until the amyloid plaque load influence of tau fibrils and tangles and neuron loss in the EC. Assuming a 10-year period, evidence seems to favor this period as the best target for an intervention. In 2001, AN-1792 vaccine trial for mild and moderate AD patient showed that amyloid plaque was dissolved, but amyloid was not removed from the brain, along with no impact on tau or tauopathy, and neuro-degeneration continued. Neuron loss continued without amyloid plaque influence (possibly aging?). If an intervention could receive market approval to dissolve and clear amyloid plaque, then Amyloidosis could be treated as a separate disease with an end-point of prevented amyloid load from triggering EC tau fibrils and tangles. With such an end-point, market approval of an Amyloidosis intervention could avoid the current AD requirement of "meaningful cognitive benefits". Such strategy would provide hope for future candidates, along with the probability of preventing a future AD tsunami.

RECOMMENDATIONS
There are four drugs candidates currently targeting amyloid plaque and clearance of soluble amyloid. The candidates are Solanezumab, Crenezumab, Aducanumab, and Gantenerumab. They all are in trials of symptomatic AD patients. Bruce assumes these patients already have neuron loss in their entorhinal cortex's level two area (Braak's 1991 evidence) and of a significant loss of neurons (30% per Gomez-Isla 1996 evidence).

Assuming these drugs do not demonstrate efficacy but demonstrate dissolving amyloid plaque along with preventing aggregation for a significant time (say two years or more). Could these drugs then be considered for market approval for treatment of non-symptomatic patients in the Amyloidosis period of "Bruce's Hypothesis: "Prevent Alzheimer's Diseases"? Could this be a preventive option?

CONCLUSION
Research evidence over the last thirty years not only identified neuron loss in the temporal lobe's entorhinal cortex (Braak 1991 and Gomez-Isla 1996 autopsy reports, as well as Tau Pet Scan tracers in living human's), amyloid load impact to fibrils and tangles (Giannakopoulos 2003), and the lack of benefit for dissolving amyloid plaque to mild and moderate AD patient (AN-1792 vaccine trial) but appears to support Bruce's Hypothesis: "Prevent Alzheimer's Diseases". In addition, the failed trials that targeted amyloid in mild and moderate patient suggests that once significant neuron loss occurs, neuron loss continues, whether by AD and/or aging.

Figure 1 below provides an early Alzheimer's period visual illustration of Bruce's Hypothesis: "Prevent Alzheimer's Diseases".

Figure 1, hypothesis, added into email by author.

EXCERPT FROM BRUCE'S BOOK (ABC's OF ALZHEIMER'S DISEASE
Results from the 2001 AN-1792 Phase I follow-up trial provided an "outside the box" indicator -- reported but never emphasized or recognized. Two patients with MMSE scores of 25 and 24, and whose immune systems generated antibodies, showed improvement, with new MMSE scores of 30 and 28 respectively (C. Hock et. al., May 2003). Could this be the type of improvement or delay expected in presymptomatic patients if plaque is dissolved or prevented from aggregation? Were these patients early enough in the disease decline process that damage was not too far advanced. Was this a missed opportunity not to have followed these two? How long would the anti-bodies remain effective (if they ever were) before neurodegeneration reappeared, if ever?


FACEBOOK COMMENTS  |  10-19-2018

The morning sessions of the October 19 meeting were streamed live as a HHS Facebook Event. Below are the comments left there during the stream.

L. Raney

Thank you,very informing.

S. Lewis

Will this be available for viewing later?

ANSWER

Meeting information and material is available online at https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services-meetings. The videos are usually available 1-2 weeks after the meeting is held.

M. Kendall

Can you start to livecast ACIP meetings as well? Please start paying attention to the corruption there.

C. Kennedy

Watching from NYS

D. McCusker

Drain the Swamp in Massachusetts. State workers who abuse. Aide and Abet. Who forget their verbal order to leave people alone.

P. Bryant-Trerise

Doctors do punish patients for medical questions


M. Sterling  |  07-19-2018

I stopped by to provide an update on our family's journey with dementia. As you may remember, my husband and I have 3-out-of-4 parents impacted by the disease. My father-in-law has Alzheimer's. It's progressing. My husband and I were convinced that we had the right tools to find caregiving support for my mother-in-law. After all, we had all the lessons-learned from supporting both of my parents. We knew where to start, who to call, what to say, the right buttons to push. It would be different this time.

Sadly, that is not the case. In fact, the only support we've received is from the VA. My mother-in-law receives 10 hours of respite/wk from a VA caregiver. This began about 4 months ago. The downside: it took almost 2 years of pleading with the VA to put this resource in place. Frankly, this is disgraceful.

Low income seniors with Alzheimer's and their caregivers are falling through the cracks. The safety net has failed miserably. Families like ours want to keep their loved ones at home. But there is no infrastructure that allows us to do this. Medicare does not cover anything related to Alzheimer's care. As we found out with my parents, the only recourse we have is navigating the complicated Medicaid eligibility process and placing our loved ones in longterm care. Then you discover that finding an available bed is also a massive undertaking that involves long wait lists. When a bed finally becomes available, you find out that nursing homes have a revolving door of staff members who are not trained in dementia care.

The amount of stress this is putting on families is impossible to quantify.

We need a sea change in Alzheimer's care and we need to create a roadmap for home and community-based services to get us there. This is an epidemic and the response from the VA, CMS, and all federal agencies must reflect that. Thank you.


M. Sharp  |  10-15-2018

My name is Matthew Sharp. I am the Program Manager for The Association for Frontotemporal Degeneration and I appreciate this opportunity to offer comments from AFTD.

I primarily want to thank the Long Term Services and Supports sub-committee for the planning the sessions this morning. Accessing quality care remains a huge challenge for people living with FTD and their families and care partners and I am glad to see the LTSS sub-committee give such attention to this subject.

At the root of the problem of finding quality care for people with FTD is the fact that it is a rare disease that most healthcare professionals never encounter. This scarcity of experienced professionals is compounded by the unique presentations of the disease. Most of the time FTD doesn't look like dementia. It looks too young, or too healthy especially to healthcare providers who are accustomed to serving people in their 70s or 80s and who equate dementia with memory loss. A person in their 50's who just bought a new car just looks successful, or at worst like they are having a mid-life crisis. The fact that they used their children's college savings is typically hidden, but even when discovered; it is not usually seen as a sign of dementia.

It takes someone with special experience to recognize personality and behavior changes as symptoms of a neurological disease. But more to the point, how do you treat these symptoms once they are recognized. I do not know, but I believe the first step is to have discussions and presentations such as we have seen this morning and I thank the Long-term Services and Supports committee for taking on this subject.


D. Shubitowski  |  10-18-2018

Hello -- There was a recent announcement regarding the National Strategy for Recruitment and Participation in Alzheimer's Disease Clinical Research here: https://www.nia.nih.gov/research/recruitment-strategy.

However, when I look at the National Plan to Address Alzheimer's Disease page, the last update is 2017. Can you tell me where to find this update?

ANSWER:

The 2018 Update to the National Plan was published online this morning. It can be located at https://aspe.hhs.gov/report/national-plan-address-alzheimers-disease-2018-update.

If you are asking about information on the National Strategy for Recruitment and Participation in Alzheimer's Disease Clinical Research, a speaker will be discussing that topic in the final session of today's NAPA Advisory Council meeting (3:00-4:00pm). That meeting is being streamed live at https://www.hhs.gov/live/live-1/index.html#9474. Her presentation slides are available at https://aspe.hhs.gov/advisory-council-october-2018-meeting-presentation-together-we-make-difference.


J. Taylor  |  10-01-2018

From reading your documentation it appears that you are preparing a comprehensive plan for Alzheimer's with no persons with the disease or care partners represented on the committees.

They are encouraged to make 2 minute public comments.

Please tell me that I am misinformed!

ANSWER:

We have a person living with dementia, Rev Dr. Cynthia Huling Hummel, and two caregiver representatives, Sowande Tichawonna and Katherine Brandt, on the Advisory Council for Alzheimer's Research, Care, and Services. These three members, along with their colleagues, have equal opportunity to comment on the National Plan and to provide yearly recommendations to the federal government and its non-federal partners on ways to better tackle dementia. They participate in every meeting of the full Council, as well as on the subcommittees of the Council that they have chosen to sit on.

It is only members of the public, when attending our quarterly meetings, who are asked to limit their comments to 2min, and they are otherwise invited to send longer written comments to us at any time.

I invite you to learn more about the Council members here: https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-serv….


AUGUST 2018 COMMENTS

P. Mikesell  |  08-22-2018

I was wondering if there are any upcoming openings on the NAPA advisory council? I would be considered a volunteer health association representative. I currently assist with admissions into memory care. I would love to be part of an organization that works to optimize care quality. I'm also interested in the progress towards cure and treatment. Please let me know how I can help!

ANSWER:

Requests for Nominations are usually announced every other Spring through the NAPA Listserv. More information about the Council is available at https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services.


JULY 2018 COMMENTS

FACEBOOK COMMENTS  |  07-30-2018

The morning sessions of the July 30 meeting were streamed live as a HHS Facebook Event. Below are the substantive comments left there during the stream.

K. Cowell Price

Is there webcast info to attend remotely?

ANSWER

Information on future meetings is available at https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services#Attend.

M. Blanco

Where in the Humphrey building will this be? I am from ONC and i would like to go to this event personally if I can

ANSWER

Meeting information and material is available online at https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services-meetings. The meeting announcement is usually available 4-6 weeks before the meeting when it is announced in the Federal Register, and other materials are added as the web team receives it. Meeting materials. A NAPA Listserv email is usually sent alerting subscribers as new material is available.

G. Thomas

HHS doesn't respond on Facebook or Twitter so I'll post this here any way. From personal experience, the Patient Protection Act does not contain enough to protect the patient. One item is hospitals should be required to keep patients Electronic Health Records in atimeline, this would help reduce unnecessary test-treatments and health providers from padding their services which increase health care cost

K. Guerra

National Adult Day Service Programs.

J. Lawton

Watching from Washington DC .Caregivers need support.

L. Hatten

Good job on all the work you all do.

C. Cuffe

The elderly need our help on this

D.K. Hill

Just discover a cure or at least treatment.

R. Mitchell

There is evidence for lifestyle change as I understand it

R. Mitchell

Lifestyle change reducing risk and reducing Dementia

T. Lyons

Thank you for supporting Alzheimer's research and care

L. Gunter Mantz

Please make these documents available. I am in the Executive Board of the RI Dementia State Plan revision. We need this information.

ANSWER

Meeting information and material is available online at https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services-meetings. The meeting announcement is usually available 4-6 weeks before the meeting when it is announced in the Federal Register, and other materials are added as the web team receives it. Meeting materials. A NAPA Listserv email is usually sent alerting subscribers as new material is available.

L. Gunter Mantz

Please help remove the stigma so people will seek help, and healthcare providers recognize that there are ways to treat the person so we can treat the disease. http://www.dementiatraining4life.com/

J. Lawton

I Am a caregiver,. It took financial, physical, and emotional toll on the patient, as well as myself.we both suffered, because I didn't know the signs, and I didn't know how to get help.


A. Helsing  |  07-23-2018

As the leading human rights organization for all individuals with Down syndrome, the National Down Syndrome Society believes the importance of caregivers should not be underestimated. Last November, in honor of National Caregivers Month, NDSS and our partners released our "Alzheimer's Disease & Down Syndrome: a Practical Guidebook for Caregivers" specifically for those caring for an individual with Down syndrome diagnosed with Alzheimer's disease. We want to show caregivers that NDSS is with them every step of the way and provide resources about Alzheimer's disease gathered into one collective guide.

The prevalence of Alzheimer's disease in the Down syndrome community is very high. This guidebook was written to help empower the caregivers and families with knowledge and guidance about the connection between Down syndrome and Alzheimer's disease, how to carefully and thoughtfully evaluate changes that may be observed with aging and how to adapt and thrive within an ever-changing caregiving role when a diagnosis is made.

Individuals with Down syndrome are now going to college, getting competitive jobs, getting married and living long, full lives. We know this guide will be an amazing resource for the caregivers of those with Down syndrome as they age.

We encourage everyone on the Advisory Council to click HERE or visit our website at https://www.ndss.org/ under Publications to obtain this vital resource.

If you have any questions, please contact the NDSS Director of Government Relations.

We look forward to working with the Advisory Council on these important issues.


J. Dwyer  |  07-23-2018

The Capacity of Alzheimer's Disease Clinical Trial Sites Unlikely to Meet the Demands of Pending Therapeutic Clinical Trials

Introduction

While attention is often given to the Alzheimer's disease (AD) pipeline and successful recruitment, the capacity of current AD trial centers to enroll and execute these trials is equally important. Even if we can recruit qualified participants, sites that can accommodate these participants are limited. The Global Alzheimer's Platform (GAP) Foundation estimates that the number of qualified sites in North America to conduct pending AD clinical trials represents less than 50% of the number of sites required to meet the demand of AD clinical trials in the pipeline. This shortage puts the timely discovery of a cure for AD at risk.

Focusing on the capacity challenge in AD trials will reduce the time and cost of AD clinical trials, and-- more importantly -- will increase the likelihood that all the trials currently anticipated are completed on a timely basis thereby speeding the delivery of innovative medicines to those suffering from or at risk of AD.

GAP Site Network

List of Alzheimer's Disease Clinical Trial Network Research Centers.

Methods

Researchers Against Alzheimer's (RA2) publishes an annual AD development pipeline. According to the 2017 RA2 report, 55 phase 2 or 3 complex therapeutic trials for treatment or prevention of AD/Mild Cognitive Impairment (MCI) will be enrolling in 2018-2019*.1 Approximately 25,277 participants will need to be randomized for these clinical trials in North America in the next 24 months.

Global Alzheimer's Platform Network (GAP-Net) metrics were used to calculate the current capacity of the field to meet this level of enrollment. GAP-Net consists of 62 AD trial centers, both private and institutional, dispersed across North America. GAP collects metrics from its sites on recruitment and site performance. Data gleaned from GAP-Net were used to extrapolate the predicted performance of the whole field.

In 2017, GAP-Net sites randomized an average of 25 participants per site into comparable phase 2 and 3 therapeutic trials. Extrapolating this average to all sites over 2 years, GAP estimates that a total of 505 sites (including GAP-Net sites) would be needed to randomize 25,277 participants in AD clinical trials.

25,277 Participants, 505 Sites, 55 Completed AD Clinical Trials.

There is no absolute agreement on how many sites in North America are equipped to conduct the trials described in the RA2 report. GAP, and other observers of the field, conservatively estimatethat there are approximately 200 qualified AD trial sites in North America. Therefore, site demand exceeds capacity by 250%. These projections pose important questions about how the field will address the need to complete clinical trials in a timely fashion.

Results

Total # Sites Needed as Capacity Increases.

If current GAP-Net site capacity could be increased by 50% (+12.5 participants per year) through GAP's optimization efforts and capital investment, 30 fewer sites would be needed. Based on GAP-Net's projected growth in 2018 to a total of 100 GAP-Net sites, if the number of participants could be increased by 50%, 50 fewer sites would be needed. Even a modest increase of 10% improvement in enrollment across 100 sites would result in 10 fewer sites being needed overall.

Discussion

GAP is analyzing a number of tactics in the face of this strategic threat. GAP's strategy for addressing the problem of limited site capacity is to enable sites to perform more efficiently and thus better employ their current resources as well as to invest more resources into sites.

AD Research Site Current Capacity = GAP Direct $ Investment + GAP SSU Improvements + GAP Improving Site Efficients = Optimized AD Research Site Capacity.
  • By building an organized consortium of sites -- all focused on operational improvement and enrollment innovation -- GAP is increasing site capacity or, in some cases, creating new capacity to enroll participants. Similar models exist in other therapeutic areas such as cancer and stroke.

  • In addition, GAP is investing and stimulating investment to improve infrastructures. In previous research, GAP has been able to show that investing in site infrastructure can substantially increase enrollment.2

  • GAP facilitates and supports GAP-Net site start-up (SSU) activities including a central IRB, common contract template, and a high-touch concierge start-up model.

  • GAP has developed its Site Process Optimization program to improve the efficiency and effectiveness of the study pre-screening and screening processes through formal process evaluations.

Conclusion

To successfully execute trials in the AD pipeline, changes to the current system are critical. GAP's projections suggest that many pending trials cannot be completed on schedule without addressing the shortage of clinical trial capacity. It's likely that these changes will come from a broad spectrum of solutions. GAP-Net is poised to increase site capacity both by increasing the total number of sites, shortening the duration of AD clinical trials, collaborating in infrastructure investment, and facilitating site optimization activities.

In addition, GAP is incubating novel pre-screening technologies which are intended to reduce the rate of screen failures, thereby creating additional site capacity. While GAP believes these tactics will make a significant contribution to reducing the shortage, larger and more systemic strategic programs need to be considered to close the gap between pending AD clinical trial demand and the supply of clinical trial sites in North America.

References

1 Alzheimer's Drugs in Development Pipeline. UsAgainstAlzheimers Web site.https://www.usagainstalzheimers.org/sites/default/files/alzheimers-drugs-development-pipeline-2017.pdf?utm_source=RA2Pipeline&utm_medium=PressRelease. Released July 2017. Accessed June 7, 2018.

2 RichardMohs, Gabe Goldfeder, et al. Novel Recruitment Strategies for Clinical Trials. Oral presentation at 2017 Alzheimer's Association International Conference; July 2017; London, England.

* The RA2 report that was recently released in July 2018 did not materially impact our results.

Contact Information

GAP Foundation: Website: http://globalalzplatform.org/

ATTACHMENT:

R. Mohs, G. Goldfeder, J. Bork, J. Dwyer, & D. Beuregard, The Capacity of Alzheimer's Disease Clinical Trials Sites Unlikely to Meet the Demends of Pending Therepeutic Clinical Trials, 2018. [Available as a separate link: https://aspe.hhs.gov/sites/default/files/private/pdf/259571/cmtach-JD6.pdf]


M. Janicki  |  07-23-2018

Dr. Keller and I are the co-chairs of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) (http://www.aadmd.org/ntg). The NTG is an affiliate of the American Academy of Developmental Medicine and Dentistry and is associated with the Rehabilitation Research and Training Center on Developmental Disabilities and Health at the University of Illinois at Chicago.

Dr. Keller and I want to use the public comments opportunity to raise before the Council an issue that continues to have resonance -- the need to enhance supports to families and others who are the primary caregivers for adults with intellectual disability affected by dementia resulting from Alzheimer's disease and other related causes. Recently, the Wall Street Journal noted on its front page the issue of the declining reservoir of caregivers for our aging population and the need to shore up supports for caregivers nationally. The article noted that "today, an estimated 34.2 million people provide unpaid care to those 50 and older *** and help keep people out of costly institutions" and went on to cite the at-times dire situations of affected persons lacking home-based supports.i The article focused on the both the lack of persons, both paid and un-paid, who could aid with caregiving, and the growing unfulfilled needs of existing caregivers wrestling with providing care for the many persons affected by Alzheimer's disease.ii

The NTG recognizes that home-based and familial caregiving, as well as the resources to enable it, is an issue facing many families in the general dementia care community and wants to emphasize that these same concerns resonate broadly throughout the community of long-term family (and other) caregivers of persons with intellectual disability. Given this context, this is an issue that we wish to again bring up before the Council.

In a recent article published in the journal, Alzheimer's & Dementia: Translational Research & Clinical Interventions,iii the authors presented the updated findings and recommendations that stemmed from a pre-summit report originally submitted to the 2017 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers.iv The information in this article should have much interest to the Council as it discusses and formulates its next update to the National Plan to Address Alzheimer's Disease.v

The article noted that as the population of older adults in the United States continues to rapidly increase, this group will likely need additional services and supports. Caregivers of adults with intellectual disability and dementia face many of the same challenges as do caregivers of other older adults with dementia. However, they often experience unique patterns of caregiving, face additional challenges and stressors, and draw from different sources of support and education.

The article related that the working group that produced the report examined five major areas related to programs and caregiving: (1) challenges of dementia; (2) family caregiving interventions; (3) supportive care settings; (4) effects of diversity; and (5) bridging service networks of aging and disability. Relevant key points made in the article included:

  • Early diagnosis is essential to ensure timely interventions, such as medication for symptom management, establishing advance care plans, and psychosocial interventions for both the adult and his or her caregiver.

  • There is a need for increased diagnostic competency among diagnosticians, more public awareness in general, and accessible information designed to raise the "index of suspicion" for caregivers of persons with intellectual disability.

  • Dementia-related caregiving in this group poses idiosyncratic challenges and manifests special demands, as caregivers need to be more alert to subtle changes in function due to the presence of lifelong impairment and confront the need to transition from routine care--on the presence of an intellectual disability--to specialty care and adapt to stage-related changes when dementia becomes evident.

  • There are differences among adults with intellectual disability and dementia in their trajectory of dementia (often with earlier onset of dementia), a shorter duration of dementia, and diagnostic difficulties given lifelong neurocognitive limitations and the fact that some adults will require lifelong services and supports, including family caregiving or supported living outside the family home.

  • In many instances, other kin--primarily siblings--play a significant supportive caregiving role for adults with intellectual disability when their parents are no longer able to provide care.

  • Lifelong caregivers often have different experiences from later-life caregivers with respect to adaptation, ascendance to caregiver roles, and with mobilizing and drawing on distinct networks of support.

  • Like other caregivers, those of adults with intellectual disability and dementia cope with changing behavior and associated declines, seek out information and resources to help with sustaining caregiving, try to obtain help with diagnostics and advice on interventions, contend with financial and residential care planning, and seek counsel on dealing with advanced dementia and end-of-life care.

  • Adults with intellectual disability who reside in specialty dementia care group homes often transition from regular group homes or from family homes and may remain in such dementia care homes for up to 10 years; given this, a greater investment in research on community dementia-capable care and the identification of best practice applications geared to stage-related functional decline is warranted.

  • Research dedicated to understanding the course of dementia and the impact of caregiving has in large part excluded (or not actively included) people with intellectual disability in study populations.

  • There is a dearth of research exploring varying cultural perceptions of dementia among caregivers of adults with intellectual disability and what norms exist for extended caregiving, which often leads to a misalignment between public policies and state services, and meeting family caregiving needs among some culturally distinct groups.

  • Public policy targeting caregivers of adults with intellectual disability isn't usually sufficiently sensitive to the needs of variations of "minorities" and diverse geographic conditions (such as living in rural or remote settings), and consequently may not always adequately reflect cultural and geographic awareness.

  • Professionals in the field of aging often do not feel adequately prepared to work with and/or meet the needs of persons aging with lifelong disabilities or individuals with early and mid-adulthood onset disabilities; thus, more work is needed in bridging aging and disability services to help find solutions to deficits in awareness and ideological differences that may hinder cross-network collaborations.

The working group report recommended overall that there be increased supports for caregivers of adults with intellectual disability and dementia; increased research on community living settings related to people with intellectual disability (and including caregivers of persons with intellectual disability in dementia research); acknowledgment of the influence of cultural values and practice diversity in caregiving; increased screening for dementia and raised public and professional awareness; and leveraged integration of the nation's aging and disability networks.

Pointedly, the article also noted that there are many similarities between the needs of caregivers who are caring for adults with intellectual disability affected by dementia and those who are caring for other adults similarly affected. Both need targeted aid with early detection, help with accessing diagnostic services, counseling, and aid with planning for the future, as well as assistance with housing modifications, information about care management, and other special services that help with caregiving as dementia progresses. However, a barrier to meeting these needs is that often this group of caregivers is not considered in general planning and provision of needed dementia caregiver support services.

One last point, as it was noted this past week at the Alzheimer's Association International Conference 2018 in Chicago, neurodegeneration in adults with Down syndrome (an intellectual disability with high risk for Alzheimer's disease) can be biologically detected from about the early 30svi, which means the genesis of the disease begins early in this group and may lead to early onset usually noted in the early 50s. If undetected or untreated, the disease can have profound effects on adults with Down syndrome, typically leading to death within one to seven years following diagnosis. Given this, any initiatives designed to compensate for potential early neurodegeneration, increase brain health, and modify dysfunctional lifestyles early in adulthood can be beneficial. To this end, the NTG is pleased to report to the Council that it has entered into discussions with the AARP and the National Down Syndrome Society, to create an adaptation of the AARP's and the Global Council on Brain Health's existing campaign on brain health for use with the intellectual disability community. It is our goal that although research is still on-going as to the genesis of Alzheimer's disease, collectively we can aid families utilize now whatever information is available to delay the onset of cognitive decline and behavioral dysfunction in adults with Down syndrome (and other intellectual disability). It is our hope that the Council will support these efforts and incorporate designs and aims for these initiatives into the upcoming update of the National Plan.

In bringing these articles, reports, and initiatives to the attention of the Advisory Council on Alzheimer's Research, Care, and Services, we trust that this information and the recommendations related to caregiving and intellectual disability will be integrated into the next iteration of the National Plan Update -- especially as this group of adults and their caregivers are one of the 'populations disproportionally affected' as noted in the original National Plan.viiTo this end, the National Task Group stands ready to assist and contribute to such efforts.

  1. Ansberry, C. (2018). U.S. is running out of caregivers. Wall Street Journal, July 21, 2018, pp. A1, A10.

  2. https://www.msn.com/en-us/money/healthcare/america-is-running-out-of-family-caregivers-just-when-it-needs-them-most/ar-BBKRlWd?ocid=spartanntp

  3. Heller, T., Scott, H.M., Janicki, M.P., & Pre-summit Workgroup on Caregiving and Intellectual/Developmental Disabilities. (2018). Caregiving, intellectual disability, and dementia: Report of the Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities Alzheimer's & Dementia: Translational Research & Clinical Interventions (e-print, ahead of publication). https://www.trci.alzdem.com/article/S2352-8737(18)30030-1/pdf

  4. Heller T, Scott H, Janicki MP, and the Pre-Summit Workgroup on Caregiving and Intellectual/Developmental Disabilities, Caregiving and intellectual and developmental disabilities and dementia. Report of the Pre-summit Workgroup on Caregiving and Intellectual and Developmental Disabilities. Chicago: Department of Disability and Human Development, University of Illinois at Chicago; 2017. Available at: https://aspe.hhs.gov/pdf-report/caregiving-and-intellectualand-developmental-disabilities-and-dementia-report-pre-summit-workgroup-caregiving-and-intellectual-and-developmental-disabilities.

  5. National Plan to Address Alzheimer's Disease. US Department of Health and Human Services. (2012).

  6. Carmona-Iragui, M. (July 2018). Plasma biomarkers diagnostic performance to diagnose Alzheimer's disease in Down syndrome. Paper presented at the AAIC/ISTRAART Down Syndrome PIA meeting, Chicago, Illinois (July 21, 2018).

  7. National Plan to Address Alzheimer's Disease. US Department of Health and Human Services.(2012).


P. Gann  |  07-20-2018

As the parent of a 46 year old daughter with Down syndrome I am very interested in the work of the Advisory Council for the National Alzheimer's Project Act. As you know people with Down syndrome have a very high incidence of Alzheimer's which appears earlier than the general population and progresses more rapidly. I found the presentation of the DIAD population very interesting and compelling but that population has a lower risk of developing Alzheimer's disease than those with Down syndrome. In addition there is uncertainty and a lack of good medical services to deliver a diagnosis and programs to address the issue when diagnosed. This problem is only going to grow as the baby boomers' children (in the case of Down syndrome often later in maternal life) reach their 40's and above. Now is the time for developing strategies to address this specific population when planning for the general population.

My daughter, Kyle, is enrolled in the NIA's study on Alzheimer's disease and Down syndrome searching for biomarkers. It was not an easy study for her involving a long MRI, PET scan, lumbar puncture, blood work and cognitive and memory testing but she managed to complete the needed tests and is prepared to return when called. It was disappointing not to receive the results of that testing. I hope you will be hearing reports of this study as it progresses.

While Kyle manifests the symptoms of Mild Cognitive Impairment, her condition has not progressed. Her family and I are prepared for this to change in the future and feel this gives us time to reach out to people like you. We do not want you to forget the people with Down syndrome now suffering and failing as the result of Alzheimer's disease. We do not want you to forget the aging parents caring for their failing children. We do not want you to forget the brothers and sisters left to manage their siblings while caring for aging parents. We do not want you to forget Kyle and the others like her who have worked so hard to be a part of our society and are now facing the prospect of being decimated by this terrible disease.

Please see that this population is considered and that their voices are heard as you meet.

This is Kyle...remember her.

Photo of P. Gann's daughter Kyle.

T. Morrison  |  07-19-2018

I would like to address regression and the frequent misdiagnosis, or would it be more proper to say incorrect diagnosis, of Alzheimer's disease and or dementia for very young people with Down syndrome. I know, from personal experience how difficult it is to get an accurate diagnosis when our loved ones with Down syndrome start showing decline and loss of skills.

Here is our story:

This regression is crippling people like my 27-year-old son who, at around age 21, was showing regression. His quality of life was slowly diminishing from being an active young man in his community and in school, to sitting in a chair and staring at walls. Jonathan spent days sitting in a bed when his confusion was so high.

So, these are some of the things that happened when my son started to have regression. First, depression for both him and me, as his caregiver. At one point, about two years after his regression began (and we still had zero answers about why this was happening) the regression was getting worse. His confusion caused him to be angry, and he started to hit and abuse others that were trying to help him. He stopped activities he loved such as going to school, going to jobs with the job coach, going to fun activities like dances, playing baseball, and riding his bike.

Our depression grew and mine got so severe that I was nearly hospitalized for mental health. My family was falling apart because I was focused so highly on what was wrong with my son. I was unable to properly mother and care for my teenage daughter.

By the time I found the online caregiver support group sponsored by the NTG, and the day I finally reached out to the Alzheimer Society I was suicidal. I don't like sharing this, but that's the reality. It was at that very low point that I started thinking about the quality of my son's life. It was all consuming. With the help of the leaders of the online group and my local Alzheimer's Association, I was able to start looking at causes for his aggression and some solutions.

This terrible time in our lives could have been avoided, I believe. It took over a year before we learned that my son does not have Alzheimer's (although most of the signs he showed looked like Alzheimer's disease). He has Down syndrome Regression, which means he has lost skills that he won't regain -- but he isn't dying from Alzheimer's.

My ask today is that the NAPA Council work with people like those in the NTG to help doctors understand the difference between Down syndrome Regression and Alzheimer's. I would like to make it easier to figure out what is truly wrong with the young adults who are showing regression. If there is a medical reason, perhaps it might be addressed with treatment or medication so that their lives can improve, possibly allowing them to relearn skills they had previously. There needs to be a medical checklist available to doctors, especially neurologists and psychiatrists, and others who work with people with intellectual disabilities, especially people with Down syndrome.

Thank you for the opportunity to share our experience related to a misdiagnosis of Alzheimer's disease and the turmoil that created for my son and our entire family.


S. Sozansky  |  07-19-2018

First, I would like to thank the Advisory Council for giving me the opportunity to address them today. I am here on behalf of The Association for Frontotemporal Degeneration (also known as AFTD), as well as the FTD community as a whole. I will start by saying that I have been directly impacted by FTD. My father was diagnosed with the disease in 2008 at the age of 58. His symptoms became noticeable when it was discovered that he had difficulty typing on a computer, putting words together, and when he began to exhibit unusual behavior. I would be remiss not to include the fact that my father was a well-known attorney with aspirations of becoming a judge. He was a brilliant man who had a passion for social issues.

My father's battle with FTD was long and arduous, and lasted 8 years before his death in 2016. I watched him decline little by little until he was a shell of a man with nothing left but the emptiness in his eyes. There is nothing more devastating than watching a person slowly lose their personality, their memory, and their ability to speak until all that remains is their physical presence.

And while this experience was devastating, I know my family is not alone in this journey. There are thousands of individuals, caregivers, and families battling FTD on a daily basis without any access to resources. As a lead volunteer for AFTD, I frequently receive phone calls from family members of individuals diagnosed with FTD who have nowhere to turn. The desperation and confusion in their voices haunts me as I struggle to offer them my knowledge or connect them to AFTD. I am here today to ensure that you remember FTD and my father by asking that you continue to improve upon and expand the resources that are included in the National Plan. Specifically, that you take the needs of younger caregivers and patients, the financial impact of FTD, and the need for better long-term support service options into consideration when updating the National Plan. It is imperative that other individuals and families battling FTD have unrestricted access to the necessary resources that can assist them. Thank you for your time today.


M. Miguel  |  07-06-2018

I am doing a bit of research for a mental health editorial project I'm working on, and I found a page of your site (https://aspe.hhs.gov/report/public-comment-index-national-alzheimers-project-act) that mentioned Abuse. 2 quick questions:

  1. Would you be OK if I possibly link to and/or mention your website from this mental health project? Simply put, the project is focused on providing free online content to people about mental health/illness and related topics. (there are no fees involved, and your content wouldn't be copied)
  2. This project I'm working on is with a leader in the mental health space, and I know they're always looking to work with sites like yours; often contributing funds to organizations and website owners to list their free resource in related content and/or providing unique content to be published online. Do you mind if I forward this email conversation to my contact at the company so they can follow up with you directly?

Either way, thanks for your time.


JUNE 2018 COMMENTS

S. Price  |  06-01-2018

I would like to be informed on the latest of dementia. I am the caregiver for my husband who is 93. Is there a way he could go into the project. I need all the help I can get in dealing with this. I try many and sometimes succeed in questions him before giving him answers that he can't remember.

Any help you can give me would've appreciated, as I not a youngster either.


MAY 2018 COMMENTS

W. Rapkin  |  05-22-2018

I am an Associate Producer with a television series that airs nationally on Public Television called "Spotlight On". "Spotlight On" has aired for over 26 years on PBS stations, as their only public awareness and education, audience monitored, 3-6 minute filler programming. We are interested in producing a show highlighting the National Alzheimer's Project Act and HHS, informing the viewers about your mission of promoting awareness, research, care, and services for those affected by Alzheimer's and related diseases. We can produce a show on any topic or initiative you think the public, caregivers, health professionals, and nursing home and long term care administrators should know about. For instance, empowering patients, families, and staff through support, communication, quality improvement programs, and care standards. We can also focus on research, detection, and innovative treatments.

As owner and underwriter of your show, the NAPA initiatives will reach millions of Public Television viewers who will learn how to contact your website for more information. In addition, you will receive master copies of the show to use and distribute, a Public Television Audience Monitoring Audit Report to track viewership and markets the show airs in (see sample reports in our media kit and on our website), and a high definition compression of the program for use on your website, on Youtube, at conferences, media events, for public outreach and awareness, partnership marketing, trade shows and exhibits, and other social media applications. Your organization would own the program to use as you wish, and we will get it aired on Public Television guaranteed in our contract. We are SAM vendor approved to provide Spotlight On programs to federal agencies. having worked with the NIH, CDC, FEMA, NASA, USDA, Administration on Aging, and DOJ.

"Spotlight On" shows are customized, informative, and interesting short programs that air in between regular broadcasts on PBS affiliates as a syndicated show. We produce programs on a wide variety of topics and subjects, and there is a one time flat production cost of $30,000. This cost includes all air time for year or more (with a minimum guarantee of 3 million viewers and 500 airings in the first three months of air time), a custom script over which you will have control of topic and content, editing, location shoots, interviews, music, and voiceover narration. Most of our programs air for years, far exceeding the minimum guaranteed viewership. If you could find a partner organization to help with the cost, they would receive everything listed in this proposal, plus credit and/or interviews in the show, and they could also use it in any way.

Please review our media kit on our website, and other information about the show at http://www.trivue.org. In them, you will find an overview of the series, shows you can watch, and a very extensive client list. You can watch shows on various topics including health, medical, and consumer awareness programs, at http://www.trivue.org/all-shows-1/. Your show would be customized according to your specifications and needs.

Let me know if there is interest in producing a "Spotlight On" show with us, if you have questions, or would like to speak. In the meantime, thanks in advance for your consideration.


APRIL 2018 COMMENTS

T. Buckley  |  04-23-2018

I would like to thank all the council members and support staff of the NAPA Advisory Council for your tireless efforts towards a seamless, person-centered, young onset Alzheimer's disease services and supports system that is sustainable. It is time to ensure that our commitment is turned into concerted action. The National Alzheimer's disease Advisory Committee sets out what it intends to do to help improve the lives of Americans with intellectual and developmental disabilities (I/DD) living with young onset dementia. However, radical and sustainable change will only come about through the action of persons served with I/DD living with young onset Alzheimer's disease, carers, family members, and organizations working together to challenge fragmented support and services from a myriad of providers to implement a comprehensive IDD syndrome specific person-centered young onset dementia capable system.

Outcome

Persons served with Intellectual and Developmental Disabilities (I/DD) (especially Down syndrome) living with young onset Alzheimer's disease have access to a timely, accurate, and compassionately delivered diagnosis of young onset dementia.

Problem

The Cognitive Impairment Care Planning Toolkit G0505 does not identify I/DD(especially Down syndrome) assessment tools.

I commend and applaud the Alzheimer's Association which has long advocated for Medicare reimbursement for services aimed at improving detection, diagnosis, and care planning and coordination for persons served living with Alzheimer's disease and related dementias (ADRD) and their caregivers.

G0505 provides reimbursement to physicians and other eligible billing practitioners for a clinical visit that results in a comprehensive care plan. G0505 requires a multidimensional assessment that includes cognition, function, and safety; evaluation of neuropsychiatric and behavioral symptoms; review and reconciliation of medications; and assessment of the needs of the patient's caregiver. These components are central to informing, designing, and delivering a care plan suitable for patients with cognitive impairment.

The assessment tools identified in the Cognitive Impairment Care Planning Toolkit are for detection of dementia in the general population and are not appropriate for persons served with intellectual and developmental disabilities (I/DD) (especially Down syndrome). For example, widely-used tools such as the Mini-Mental State Examination (MMSE) (Folstein & Folstein, 2001) assume the pre-morbid level of functioning to have been within the average range. There is great variability of functioning within the population of persons served with (I/DD). Comparison with 'peer-related' norms is not possible as it is with mainstream dementia assessments. Assessment of decline needs to be personalized to each person served with I/DD (especially Down syndrome) with their own unique 'baseline of functioning' being the comparison when concerns arise.

Solution

I implore the NAPA committee to create an informational "Cognitive Impairment Care Planning Toolkit (I/DD, especially Down syndrome specialized) G0505" document.

Interest from all parts of the aging, I/DD, health, behavioral, and social services spectrum abounds with mental acquisitiveness. Education, training, guidelines, standards of care, and skills acquisition are a hallmark of exceptional-quality I/DD specialized young onset dementia care. It is extremely well referenced not just in terms of guides for persons served with I/DD living with young onset dementia, but also for the British Psychological Society and the NTG who developed professional guidelines for I/DD specialized young onset person-centered dementia care. The British Psychological Society and the NTG should be proud of their publication for guidance on the assessment, diagnosis, interventions and support of persons served with I/DD who develop young onset dementia.

Recognizing the epidemic of persons served with I/DD (especially Down syndrome) living with young onset Alzheimer's disease in the community are desperately in need of I/DD specialized person-centered dementia services and supports, I have provided a summary of the incredible exceptional-quality British Psychological Society and the NTG guidance on the assessment, diagnosis, interventions and support of persons served with I/DD who develop dementia to supplement the Cognitive Impairment Care Planning Toolkit. The addition of the I/DD (especially Down syndrome) specialized Dementia assessments recommendation to health care professionals will dramatically increase both awareness and exceptional-quality of the assessment, screening, diagnosis and management of young onset dementia for persons served with I/DD (especially Down syndrome) living with young onset dementia.

Screening Tools for persons served with I/DD (especially Down syndrome)

Cognitive screening in persons served with Down syndrome or other I/DD is challenging and presents several important obstacles. Baseline cognition limits both initial and interval assessments, making the diagnosis difficult. Down syndrome is also associated with a normal-age related cognitive decline and differentiating this from dementia is equally challenging. As Alzheimer's disease often presents atypically in persons served with Down syndrome with frontal type behavioral disturbance and loss of function, onset can be overlooked or misattributed (diagnostic overshadowing).

Treatable conditions that persons served with Down syndrome are more susceptible to that can be confused with young onset dementia.

  • Poor eyesight
  • Depression
  • Poor diet -- leading to nutritional problems or anemia.
  • Recent bereavement or significant change
  • Cardiac abnormalities -- especially if undetected in earlier life
  • Osteoporosis
  • Coning of the cornea
  • Hypothyroidism
  • Sleep apnea/ lack of sleep
  • Spine disturbance
  • Side effects of medication
  • Menopause
  • Hearing loss
  • Cataracts
  • Inflammation of the cornea
  • Urinary tract infection
  • Changes in knee or hip joints
  • Diabetes
  • Compulsive disorders

General Principles of Cognitive Screening in Persons Served with I/DD (especially Down Syndrome)

The I/DD specialized young onset dementia care pathway for a person served with I/DD living with young onset dementia, their families and carers will involve a workforce that is extensive and diverse, including many staff closely engaged in providing I/DD specialized syndrome specific clinical care as well as offering information, support and assistance. This I/DD specialized, young onset, syndrome specific, person-centered care may be offered in a broad variety of settings including a person served own home, community settings, residential care homes and acute hospitals. Staff will:

  • be able to recognize signs of young onset dementia and be aware that these signs may be associated with other health conditions or circumstances
  • know why early diagnosis of young onset dementia is important
  • be aware of the impact of young onset dementia on persons served with I/DD, families and society
  • be able to communicate effectively and compassionately with persons served with I/DD living with young onset dementia
  • understand reasons why a person served with I/DD living with young onset dementia may exhibit signs of distress and how behaviors seen in person served with I/DD living with young onset dementia may be a means for communicating unmet needs
  • be able to signpost person served with I/DD living with young onset dementia, families and carers to young onset dementia advice, support and information.

Young Onset Dementia identification, assessment and diagnosis

Exceptional-quality young onset dementia diagnosis and intervention is one of the objectives identified in the "Cognitive Impairment Care Planning Toolkit." Timely diagnosis is important as it helps persons served with I/DD living with young onset dementia, carers, and family members receive information, support and treatment to improve their quality of life. The diagnosis of young onset dementia where the diagnosis is more complex is carried out by a clinician with I/DD specialist skills. However, non-specialists also have an important role in being able to recognize possible symptoms of young onset dementia, refer to I/DD specialist services and provide sympathetic and non-stigmatizing support.

I/DD specialized young onset dementia specialized professionals:

  • understand the different types of young onset dementia, the stages or variants of these diseases and their primary symptoms
  • understand how to differentiate between young onset dementia, delirium, depression and other conditions presenting with similar symptoms (hypothyroidism, polypharmacy)
  • be able to undertake a comprehensive assessment for persons served with I/DD living with young onset dementia utilizing appropriate investigations and tools
  • be able to establish a differential diagnosis of young onset dementia and the underlying disease processes, where appropriate to role
  • be aware of the potential impact of diagnostic errors
  • be able to act on the findings in partnership with persons served with I/DD living with young onset dementia and the transdisciplinary team
  • be aware of the experience of a person served with I/DD living with young onset dementia and their family and carers and be able to communicate with sensitivity about the diagnosis of young onset dementia and related implications
  • know how to enroll the person served with I/DD living with young onset dementia in post-diagnosis support services and advanced care planning
  • understand the impact of a diagnosis for younger persons served with I/DD living with young onset dementia and their families
  • understand the needs of persons served with I/DD living with young onset dementia
  • understand the importance of equal access to young onset dementia assessment and diagnosis for persons served with I/DD from diverse communities
  • be able to document assessment and diagnosis decisions

Symptoms that may indicate the presence of early stage dementia in persons served with Down syndrome.

  • Disorientation
  • Loss of road sense -- may be earlier than in others
  • No interest in previously enjoyed hobbies
  • Confusion for no obvious reason
  • Onset of seizures -- may occur earlier than in others
  • Will attempt tasks without being aware that they are not successful
  • Person is not aware that they forget things
  • Loss of daily living skills
  • Walking apparently aimlessly
  • New short-term memory loss
  • Deterioration in communication
  • Loss of social skills

Reasons persons served with I/DD display cognitive decline

Efficient and effective screening for persons served with I/DD living with young onset Alzheimer's disease is required to diagnose, manage and exclude reversible causes. Older persons served with Down syndrome often have significant co-morbidities (average 5.4 comorbid conditions) and it is important to manage these multiple chronic health conditions, including young onset dementia. Management of young onset dementia, including Alzheimer's disease is like the general population, requiring prompt initiation to maximize benefit and is predominantly supportive.

Older persons served with Down syndrome have a relatively high prevalence of heart disease, obesity and diabetes for their age. Conditions mimicking young onset dementia, such as thyroid disease, are also prevalent in persons served with Down syndrome and are frequently under-diagnosed. The lifetime prevalence of thyroid disease approaches 30% and hypothyroidism, is underdiagnosed. Depression, which can also mimic dementia, is common in persons served with Down syndrome and is screened for and treated.

There are several common reasons for apparent decline in functioning in persons served with I/DD. Changes in functional ability with or without behavior change are often the initial presentation of young onset dementia in persons served with I/DD (especially Down syndrome). It is important to remember, however, that some changes may be part of the normal ageing process. There are several other reasons a person served with I/DD (especially Down syndrome) may show a cognitive decline. The list below, while not exhaustive, describes the most common reasons for change in ability. It is important to recognize that two or more comorbid health conditions is common.

  1. Young Onset Dementia: The typical presentation of young onset dementia is one of gradual loss of skills along with change in personality and cognitive decline. Young onset dementia is a diagnosis of exclusion therefore, it is important to consider other conditions that may cause loss of skills and cognitive decline, especially as many of these are treatable.

  2. Physical problems include such conditions as hypothyroidism, anemia, uncontrolled epilepsy and chronic infections. Electrolyte abnormalities, hypo- or hyper-glycaemia, nutritional deficiencies particularly vitamin B12 or folate could also cause functional decline in persons served with I/DD. A thorough physical examination and relevant clinical tests are required at the time of initial assessment. These may need to be repeated from time to time as necessary.

  3. Sensory impairments: Persons served with I/DD in general and those with Down syndrome in their middle/old age specifically are likely to develop hearing and visual impairments. Visual impairment could be due to development of cataract or conditions such as keratoconusin persons served with Down syndrome. Some 60-80 per cent of persons served with Down syndrome will have hearing problems at some point in their lives. Conductive hearing deficit caused by earwax and the narrow acoustic canal is frequently seen in persons served with Down syndrome.

  4. Mental health problems: The most common differential diagnosis is depressive illness (McBrien, 2003) but other conditions such as the exacerbation of an existing psychotic disorder can mimic the presentation of young onset dementia. Severe anxiety can also cause an apparent decline in functioning.

  5. Sleep problems: Obstructive sleep apnea or other sleep disorders can cause day time drowsiness, mental slowing as well as confusion, and are particularly common in persons served with Down syndrome. Day time drowsiness and slowing could be interpreted as young onset dementia if the sleep problem is not identified.

  6. Iatrogenic (medication related) causes: Medications with anticholinergic side effects can cause cognitive impairments in elderly people and persons served with I/DD. Use of high dose psychotropic/anti-epileptic medications and multiple medications can contribute to cognitive impairment as well.

  7. Impact of life events: Persons served with I/DD in their middle age can face several life events such as loss of a parent or long-term carer, moving away from home or loss of day activities. In some persons served, the impact of life events may lead to a regressive state with apparent loss of skills. Changes in routine such as new structure to day opportunities or changes in support staff can cause profound reactions in persons served with I/DD leading to functional decline and a dementia- like presentation.

  8. Abuse: Current or recent physical, emotional or sexual abuse in persons served with I/DD may result in loss of skills and regression and the development or exacerbation of behavior problems that might superficially mimic young onset dementia.

  9. Impact of poor environment: An unsuitable environment associated with a lack of stimulation, isolation and lack of social opportunities for positive interaction can lead to loss of skills. If this is also associated with changes in support structure, where people do not know the person served with I/DD well, these changes may be attributed to young onset dementia.

  10. Acute organic brain syndrome: This may co-exist with young onset dementia or be part of the differential diagnosis. Persons served with I/DD and uncontrolled epilepsy, for example, could present with confusionalstate that may mimic dementia. Persons served with I/DD living with young onset dementia may deteriorate rapidly and develop an acute confusionalstate when they have an acute physical health problem such as a urinary tract or respiratory infection.

Observer-rated Scales

As many neuropsychological tests are not suitable or have not been validated for use in persons served with developmental ages less than five or six, a collateral history is crucial to a diagnosis of young onset dementia in persons served with I/DD, including Down syndrome. Observer-rated scales, also called informant guided questionnaires or interviews, are often preferred over direct neuropsychological testing. Observer-rated scales must however, be interpreted with caution as ageing caregivers may be developing cognitive difficulties themselves or may know the subject too well or insufficiently to be objective. Multiple informants are consulted when persons served with I/DD reside in residential care. While they include cognitive domains, they do not directly test cognition. Several observer-rated scales have been developed, each with their own strengths and weaknesses

Observer-rated Scales

  • Dementia Scale for Down Syndrome (DSDS)
  • Dementia Questionnaire for Mentally Retarded Persons (DMR)
  • The CAMDEX-DS
  • Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID)

Neuropsychological Tests

  • The Down Syndrome Mental Status Examination (DSMSE)
  • The Cambridge Cognition Examination or CAMCOG
  • The Test for Severe Impairment or TSI
  • The DAMES (Down's syndrome attention, memory, and executive function scales)

Measures of Adaptive Behavior

  • Adaptive Behavior Dementia Questionnaire (ABDQ)
  • Daily Living Skills Questionnaire (DLSQ)

The table below is a comparison of the advantages and disadvantages of different assessment instruments for persons served with Down syndrome living with dementia.

Classification Instrument Advantages Disadvantages Sensitivity for AD in Down syndrome Specificity for AD in Down syndrome Reference
Observer rated scales DSDS

Down Syndrome Dementia Scale
Comprehensive

Scores new behaviors

Measures from early to late stage

Includes differential diagnosis scale

No significant floor effect
No measure of general disability

Cut-off varies Little emphasis on change

Restrictions on use (specialized rater)

Some redundant items Lengthy (up 30 mins) administration time
89% 85% Gedye
Observer rated scales DMR

Dementia Questionnaire for Mentally Retarded Persons
Includes measure of general disability

Emphasis on memory

Orientation assessed No restrictions on use Brief administration time (15-20 mins)
Requires repeat measures over time

Behavioral disturbance questions have poor reliability

low specificity in low-moderate ID Floor effects
92% 92% Evenhuis
Observer rated scales CAMDEX-DS Includes measure of general disability

Strong emphasis on change Can be used to predict cognitive decline Excellent IRR
Diagnostic rather than a screening tool

Initially designed for the general adult population Floor effects

Lengthy administration time
88% 94% Roth et al.

Ball et al.
Observer rated scales DSQIID

Dementia Screening Questionnaire for Individuals with Intellectual Disabilities
Validated in a large sample Excellent IRR Brief administration time (10-15 mins) Single fixed cut-off may limit in advanced dementia & those with different baseline disability 92% 97% Deb et al.
Neuropsychological tests DSME

The Down Syndrome Mental Status Examination
Easy to administer Limited number of domains Over emphasis on verbal skills Poor sensitivity compared to other tests Floor effects NA NA Haxby
Neuropsychological tests CAMCOG DS Neuropsychological component of the CAMDEX Quantitative score that can be tracked longitudinally Differentiates older from younger persons with DS Limited assessment of executive function Limited generalizability to those with late dementia Initially designed for the general adult population See for CAMDEX-DS See for CAMDEX-DS Hon et al.

Ball et al.
Neuropsychological tests TSI

Test for Severe Impairment
Wide range of scores

Requires little speech No significant floor or ceiling effects Brief administration time (10 mins)
No measure of general disability

Designed for the general adult population
NA NA Albert and Cohen
Adaptive behavior tests ABDQ

Adaptive Behavior Dementia Questionnaire
Excellent accuracy (92%) Brief administration time (10 mins) Designed specifically for AD Excellent IRR Effects of variables (age, race) undetermined No assessment of cognition No measure of general disability 89% 94% Prasher et al.
Adaptive behavior tests DLSQ

Daily Living Skills Questionnaire
No significant floor effects High positive predictive value Correlates strongly with direct cognitive tests No assessment of cognition

No measure of general disability
NA NA National Institute of Ageing

Table 2: Domains included in different screening and assessments instruments for persons served with Down syndrome living with dementia.

Classification Instrument Cognition assessed Behavior assessed ADLs assessed General Disability assessment/ global assessment Reference
Observer rated scales DSDS + + + - Gedye [41]
Observer rated scales DMR + + + + Evenhuis
Observer rated scales CAMDEX-DS + + + + Roth et al.

Ball et al.
Observer rated scales DSQIID + + + - Deb et al
Neuropsychological tests DSME + - - - Haxby
Neuropsychological tests CAMCOG-DS + - - - Hon et al.

Ball et al.
Neuropsychological tests TSI + - - - Albert and Cohen
Adaptive behavior tests ABDQ - + + - Prasher et al
Adaptive behavior tests DLSQ - + + - National Institute of Ageing

M. Sharp  |  04-20-2018

Hello. My comments today will be brief. On behalf of AFTD I would like to thank the NAPA council, one more time, for helping to make the Research summit on dementia care and services a reality and for giving the research recommendations generated by the summit a home. I recognize the value of biomedical research but am also aware of how desperate the immediate need for better tools and strategies for care is. While I am hopeful that the work being done to develop medical treatments for these diseases will eventually yield results, I know that there is a lot we can do today to improve care and make life with dementia better.

I also want to commend the summit organizers for including people with dementia as a stakeholder group. Including the patient's voice in research on dementia care and services is critical for understanding how services can improve quality of life

Organizing and presenting the research recommendations is the first step and I look forward to this afternoon's presentation. AFTD is also looking forward to the next steps of implementing those recommendations and remain eager to help however we can.


M. Hogan  |  04-19-2018

Thank you for the opportunity to make a brief public statement today.

I wish to reflect on the presentation made by Dr. Randy Bateman regarding the Dominant Inherited Alzheimer's Network during the January 2018 Advisory Council meeting.

First let me say that I was profoundly touched by Dr. Bateman's presentation. The rich scientific research that is focusing on this rare condition is promising and the story that Dr. Bateman told of families most compelling.

In preparation for this statement I went back and listened to the January presentation. Dr. Bateman reflected on the desperation that families feel as they face the high probability of a diagnosis. He spoke of the concern individuals identified had for their children and the motivation to participate in clinical trials based on the incredibly high risk that future generations faced. He noted that families are an essential part of this research and conveyed a deep respect and authentic concern for the community with whom he worked.

In his presentation Dr. Bateman noted the positive outcome of bringing families together to share their experiences at the increasingly successful Family Conferences. He noted the importance of the convergence of families, researchers, doctors, government regulatory representatives and the "Pharma Guys". The video that focused on the man hoping to change the future outcome for his children was a window into their reality.

By the end of Dr. Bateman's presentation I found myself experiencing a broad range of emotions that fluctuated between profound sadness mixed with realistic optimism countered by utter consternation.

The similarities between the experiences of those with Dominantly Inherited Alzheimer's Disease and the experiences of individuals Down syndrome and their families was most striking. In the brief conversation that I had with Dr. Bateman after his presentation, he acknowledged the similarities and the effort they have made to share information and protocols with those doing research on DS.

During Dr. Hodes' introduction of Dr. Bateman, he referred to the "humanly touching consortium" and the marvelous collection of human beings impacted by this rare form of Alzheimer's disease. Though people with Down Syndrome are generally not Mothers and Fathers, they are children, brothers, sisters, aunts, uncles, cousins and beyond. They are a very similarly small group of people disproportionately impacted by a devastating form of AD at a young age. Our families experience a similar fear and sense of desperation with each passing year or with each subtle change in behavior as people age. We are grateful to the community of researchers who are focused on learning more about the onset of AD in this population and hope that one day they will discover the optimal time to intervene before brain damage and loss occurs.

Recently the National Down Syndrome Society hosted an Adult DS Summit here in Washington, DC. They included many sessions dedicated to AD in the DS population. This was a very important step in bringing individuals and families together to share their stories, challenges and reality. We are most grateful to the NDSS for hosting this event. Wouldn't it be equally as significant at some future date to bring together families, researchers, doctors, government regulatory representatives and the "Pharma Guys" to focus on this marvelous collection of human beings?

I close by saying that individuals with DS are also a touching consortium about whom I one day hope to hear in this setting.


MARCH 2018 COMMENTS

F. Li  |  03-26-2018

I am writing on behalf of the Physicians Committee for Responsible Medicine and our membership of more than 12,000 plysicians and more than 175,000 other medical professionals, scientists, educators, and supportive lay members. Included in this package are more than 36,000 signed petitions from Physicians Committee members and other supporters who support more funding for human-relevant research efforts for Alzheimer's disease and related dementia (AD/ADRD). We apologize that the petitions are addressed to Ron Peterson, your predecessor, because they were signed during his tenure. Nonetheless, we feel the petition is still relevant.

Despite intense research efforts to find a disease-modifying treatment for AD/ADRD over the last few decades, 99.6% of the drugs that have succeeded in preclinical animal studies ultimately ended up failing in human clinical trials. While the scientific community recognizes that animal models do not fully recapitulate the human disease, more research continues to be invested in developing and using these animal models rather than human-based approaches for disease modeling and drug testing. But animals will always have physiological differences from humans that will impede the translation of research findings derived from animal biology. Only by transitioning to human-based approaches can we overcome this translational barrier. To reach the research goal by 2025, we need to broaden out our research strategy by investing more efforts and resources on generating human-relevant data through in vitro (e.g. mini-brains in a dish, organ-on-chips), in silico (e.g. humanbrainproject.eu), and whole person based studies (e.g. population studies, lifestyle intervention trials), as we previously recommended.

Thus, we request that you ask the Advisory Council to develop and prioritize human-focused research recommendations to advance AD/ADRD research in disease modeling, preclinical testing, and the development of non-pharmacological interventions. Please reply to inform us of your plans.

ATTACHMENT:

[ON INDIVIDUAL, SINGLE-SIGNATURE SLIPS]

PETITION

To: Ronald Peterson, M.D., Ph.D., Chairperson of the Advisory Council on Alzheimer's Research, Care, and Services

I am writing to ask you to save human and animal lives by prioritizing funding for human-relevant research efforts for Alzheimer's disease and related dementia. Animal studies have not led to safe and effective treatments for this devastating disease. In vitro, computational and careful human studies have been shown to be better at predicting response and safety. Increased focus on clinical studies on diet and other lifestyle factors are badly needed. Thousands of patients, caregivers, clinicians and researchers are depending on your leadership and stepping up to engage the research community -- please make their efforts count.

-- signature --

ANSWER:

I have been informed that your letter and petitions from Physicians Committee for Responsible Medicine were delivered to the Department of Health and Human Services which was subsequently shared with me.

Thank you for your comments and devoting time and energy to the important points you raise concerning human subject research.

I need to remind you that the Advisory Council on Alzheimer's Disease and Related Disorders is an advisory body and only has authority to make yearly recommendations. To that end, we will inform the Research Subcommittee of the Advisory Council of your letter and petitions for their consideration in their deliberations of research recommendations for 2018. Also, we will share your letter with the National Institutes of Health, which funds research on dementia including animal studies.

Thank you for your continued participation in the national platform for addressing Dementia.


B. Bennett  |  03-13-2018

Thank you for your hard work on this subject. We are serving several million seniors in FL. I am aware that the NYUCI program is a highest-tier EBP, recognized by your offices. I am interested in finding out which, if any, interventions exist for Alzheimer's patients themselves. I was wondering if you might be able to tell me about any interventions that are close or nearly close to being recognized, or possibly refer me to someone who might be able to tell me. Here in FL there is use of IMEP, which is pretty far from being an HHS-recognized EBP, and some work was done on Mindset, from a council in FL...also far from the designation. I even searched on SAMHSA site and nothing comes up. I would really just want to know the three most common interventions used nationally. We are striving for a more robust and uniform health and wellness program across the Area Agencies of our state.

For the recommendations you made 6 years ago (below), is there progress you can tell me about?

Session 5: Nonpharmacological Interventions

  1. Integrate epidemiological studies with mechanistic research to explore underlying pathways by which risk and protective factors contribute to the disease process.
  2. Continue to identify the molecular mechanisms by which non-pharmacological interventions operate and employ systems biology approaches to examine brain health in relation to, and in concert with, other organ systems.
  3. Initiate rigorously designed clinical trials in asymptomatic and cognitively impaired older adults to establish the effectiveness of physical exercise, cognitive training, and the combination of these interventions for Alzheimer's disease treatment and prevention.
  4. Combine nonpharmacological (e.g., behavioral, lifestyle, environmental) interventions with pharmacological treatments to maximize possible therapeutic benefit. Use epidemiologic information, mechanistic research in animal models, and network analysis to inform trial design and drug selection.
  5. Develop standard outcome measures to enable data comparisons across studies. These include but are not limited to ecologically valid measures of real world function, quality of life, and physical and cognitive function.
  6. Pursue the science of behavioral change for successful implementation of effective nonpharmacological interventions.
  7. Invest in research to develop technologies that promote prevention and treatment trials, clinical care, caregiver support, and in-home monitoring.

ANSWER:

Your email was forwarded here at the National Institute on Aging (NIA) at the National Institutes of Health because a project we completed last year has direct bearing on some of your questions (others are the subject of ongoing research). We personally appreciate your reaching out to ask about the status of research in these areas. At the NIA, we recognized several years ago that we needed to take a hard look at the current research in the area of Alzheimer's disease prevention (as well as prevention of cognitive decline and mild cognitive impairment), and to try to do a really unbiased and comprehensive job of looking at the data, we engaged two independent groups. The first was the Agency for Healthcare Research and Quality (AHRQ), a sister agency to the NIH, that operates a series of Evidence-based Practice Centers (EPCs). The EPCs do highly rigorous systematic evidence reviews for a living. We also engaged the National Academies on Sciences, Engineering, and Medicine -- a highly respected non-governmental entity -- to take a look at the evidence findings that AHRQ produced, consider them in a broader context of the risk factor literature (i.e., not just randomized clinical trials), ongoing research studies, etc., and develop a set of recommendations on the topic. Several of the findings from the project are relevant to your questions below. A full list of reports and publications are listed below -- but the bottom line, after reviewing a long list of potential prevention strategies -- was this (Recommendation 1 from the National Academies' report [http://nationalacademies.org/hmd/reports/2017/preventing-cognitive-decline-and-dementia-a-way-forward.aspx]):

Recommendation 1: Communicating with the Public
When communicating with the public about what is currently known, the National Institutes of Health, the Centers for Disease Control and Prevention, and other interested organizations should make clear that positive effects of the following classes of interventions are supported by encouraging although inconclusive evidence:

  • cognitive training--a broad set of interventions, such as those aimed at enhancing reasoning, memory, and speed of processing--to delay or slow age-related cognitive decline
  • blood pressure management for people with hypertension to prevent, delay, or slow clinical Alzheimer's-type dementia
  • increased physical activity to delay or slow age-related cognitive decline

There is insufficient high-strength experimental evidence to justify a public health information campaign, per se, that would encourage the adoption of specific interventions to prevent these conditions. Nonetheless, it is appropriate for the National Institutes of Health and others to provide accurate information about the potential impact of these three intervention classes on cognitive outcomes in a place where people can access it (e.g., websites). It also is appropriate for public health practitioners and health care providers to include mention of the potential cognitive benefits of these interventions when promoting their adoption for the prevention or control of other diseases and conditions.

You can read the report for free online at https://www.nap.edu/read/24782/chapter/1.

We hope this is helpful. You may also be interested in the following additional resources:

  • NIA's Go4Life program, a public health education program focused on exercise/physical activity in older adults. If your colleagues are not aware of it, it might be worth looking into, given that we encourage exercise for other reasons, even though our recent study showed that we're not quite there in terms of being able to promote it specifically for prevention of cognitive decline/Alzheimer's. [https://go4life.nia.nih.gov/]
  • The Brain Health Resource, a presentation toolkit offering current, evidence-based information and resources to facilitate conversations with older people about brain health as we age. NIA and other Federal agencies worked together to develop this content. [https://www.nia.nih.gov/health/brain-health-resource]
  • The Centers for Disease Control and Prevention's Healthy Brain Initiative Roadmap. If you're not aware of the Healthy Brain Initiative, you might find the resources here to be useful in planning your local/state programs (and keep your eye out over the next few months for an update!). [https://www.cdc.gov/aging/healthybrain/roadmap.htm]

If you have questions, or would like more information on any of these other materials/programs, please don't hesitate to ask. We want this information shared as widely as possible (they're from your tax dollars at work, after all), so please feel free to tell others!

AHRQ-NASEM Project Reports and Publications (and related editorials)

Full AHRQ Report:

Final Report from the National Academies of Sciences, Engineering, and Medicine Report:

Academic systematic review papers from Minnesota EPC team (funded by AHRQ):

Relevant Editorials:


FEBRUARY 2018 COMMENTS

N. Satyadev  |  02-23-2018

I want to inform you on some updates from The Youth Movement Against Alzheimer's.

Our low-cost caregiver respite program has officially launched, and details of the program can be found at http://www.youthcaregiving.org. Within just 9 days of advertising our program, we have received application from over 30 students.

Our efforts to pass a California Care Corps Act have received a bill number: AB 2101.

I promise you, my generation cares deeply about this issue, and I hope you will continue to explore inter-generational to the care and prevention of this disease.


S. Dergantz  |  02-08-2018

More than 5 million Americans currently live with Alzheimer's, and that number could triple by 2050.

I'm writing you today to ask you to cosponsor the CHANGE Act. The CHANGE Act promotes timely detection and diagnosis of Alzheimer's, promotes innovative approaches to supporting family care partners and removes regulatory barriers to disease-modifying treatments. This bipartisan bill has the power to fight Alzheimer's on multiple fronts, and I urge you to cosponsor the bill.

Please do the right thing and cosponsor the CHANGE Act to help us stop Alzheimer's!


JANUARY 2018 COMMENTS

T. Young  |  01-26-2018

Thank you for the opportunity to address the Advisory Council. I find the work you do to be extremely important. As a researcher and caregiver for someone with dementia I have a comment regarding the research updates. I have noticed that CMS, the VA, and ACL show a wide range of projects undertaken at the various agencies. However the NIH ony presents research efforts undertaken by the NIA. I believe I've seen a few other institutes mentioned and one presentation by the NINDS. I would apriciate hearing what is happening at other agencies, like the NINR, NHLBI, and NIGMS. While I acknowledge that the NIA and NINDS oversees the majority of Alzheimer's research I would like to see more updates that include the whole NIH and to see how the institute as a whole is addressing the national plan.


R. Louie  |  01-23-2018

This is probably too late, and may not be appropriate for a NAPA comment, but I'm submitting it for either the NAPA meeting this week or next quarter.

REFLECTIONS: NEUROLOGY AND THE HUMANITIES

Matter of Fact

Ron Louie, MD

Her face was matter of fact when she heard the prounouncement. The neuropsychologist was her colleague; he remained professional, but slipped in some sympathy with the data, which I could not appreciate.

She didn't display a mask of depression, or Parkinson disease. Her face remained pliable, not pleased, but neither terribly pained, no exhibition of perplexity, or petulance, or surprise, a pensive look, retaining its complex grace, a quiet reserve, a solemn alertness, the beauty of humane consciousness, with no further expectations.

In her own practice, she had encountered Early Alzheimer first hand: that wonderful younger woman, whose baby she had delivered, working in accounting until the numbers became exotic, then alien; she had told me about that patient, with shock, sadness, and resignation.

But I didn't understand this. I wouldn't. It was the guy, his tests, the setting. At home, I made her try to draw a clock, count backward, recite words, and copy intersecting rectangles. She tried, this good doctor who had always bested me in calculus, organic chemistry and marriage. She wasn't angry.

So how could I be mad? She was setting the example, as she had done her whole life, her whole career, without pessimism or regret, or fanfare, just ready to go on, even though her words and steps might mutate, unpredictably, ever aware of the possible endpoints, with each of us now grappling this present moment, trying to recognize its identity.

Dedicated to IRJ, MD; suggested by Meryl Comer

Neurology® 2018;90:139. http://n.neurology.org/content/neurology/90/3/139.full.pdf


E. Neebe  |  01-20-2018

I would like to respectfully ask you to consider the impact of violent Alzehimer's patients in society at large.

As the population ages, this is likely to become a significant problem. Innocent neighbors of these people need to be protected.

My mother was attacked by such a patient on her own front porch on September 13, and she died of her injuries on September 14 without ever regaining consciousness.

The perpetrator lived across the street from my mother.

The perpetrator had a previous history of attacking neighbors, and a long string of complaints, but his wife kept checking him out of institutions and bringing him home.

The police and social services "did what they could," which was not much. Social services was actually instrumental in returning him to his home a month or so before he attacked and killed my mother.

His wife is a hoarder, and the conditions in their home are unlivable.

This family is not short of money.

My mother is dead...a homicide victim...but the state will not prosecute because this man has a diagnosis of Alzheimer's. His family released his medical record to protect him from prosecution.

Things have improved for the perpetrator...his family has finally put him in a private memory support unit (did they have to lie about his violence to get him in?), and his wife has gotten rid of an abusive husband whom she was likely abusing herself.

My mother is dead. My family is devastated.

As you do your work, please pay attention to the harm a violent Alzheimer's patient can do to innocent bystanders.


F. Li  |  01-19-2018

On behalf of the Physicians Committee for Responsible Medicine, I would like to thank all the council members and support staff of the NAPA Advisory Council for your tireless efforts towards finding solutions for Alzheimer's disease. As a nonprofit organization based in Washington, DC working to advance medical research, we support the mission and goals of the National Alzheimer's Plan and hope to provide useful insights towards finding a disease-modifying treatment for Alzheimer's disease and related dementia (AD/ADRD) by 2025.

As the research subcommittee discusses "The Journey from Targets to Treatments", we urge the Council to consider three research paradigm shifts that may help us develop a disease modifying treatment for AD/ADRD:

  1. Replacing animal models with human-relevant models: Even though animals do not develop Alzheimer's disease like humans do, scientists continue to rely on using genetically-engineered animal models for disease mechanistic studies and drug development. Even when animals are manipulated to develop the disease, it is clear that they have species-specific physiological differences that can lead scientists down the wrong therapeutic development path or impede the clinical translation of drug candidates. For instance, Parrott et al.[1] reported in Neurobiology of Aging that a Mediterranean diet worsened cognitive function in a mouse model of Alzheimer's disease even though the diet has been repeatedly demonstrated to be beneficial to humans for Alzheimer's disease. The long history of recurrent drug trial failures in humans despite successes in the animal models also strongly supports that these models are not reliable and we need to push Alzheimer's drug discovery pipelines to replace animal models with human-relevant research models and methods like human stem cell derived minibrains, patient tissues, and predictive toxicology frameworks such as adverse outcome pathways. Today, with -- omic technologies and CRISPR/CAS9 gene-editing techniques, human models have the potential to be more informative than ever before. Supporting research applying these methods to human models and developing new methods to use human-relevant models for ADRD research may help us to overcome translational barriers in ADRD research. Some investment is currently being made into 21st-century models and methods using human cells and tissues. However, we need much more investment in these areas quickly.
  2. Focusing on modifiable lifestyle risk factors as targets instead of pathological hallmarks: While amyloid and tau are well-recognized pathological hallmarks of Alzheimer's disease, they may only be observable abnormalities that result from the disease process rather than drivers of the disease process. Just as we should not focus on pathological features like cotton-wool spots as treatment targets for diabetes, we should not disproportionately invest in targeting amyloid and tau for Alzheimer's disease. The fact that there is no cognitive benefit in patients despite evidence confirming the reduction of amyloid load with candidate drugs in clinical trials suggests that amyloid and tau may not be driving the disease. Moreover, they are not very sensitive or specific biomarkers for the disease. We should consider developing treatments to modify lifestyle risk factors that may drive the disease, such as saturated fat, cholesterol, and inflammatory biomarkers. If we can learn a lesson from disease-modifying treatments in other chronic diseases, it is that treating these lifestyle risk factors is effective for modifying diseases like heart disease and diabetes.
  3. Evaluating lifestyle interventions as first-line, disease-modifying treatments: Alzheimer's disease, like other chronic disease, may be highly driven by lifestyle factors like poor diet and physical inactivity. Hence, the disease could be prevented and possibly reversed by changing lifestyle habits, as demonstrated by the successes of lifestyle modification trials like the FINGER trial. It is important to realize that lifestyle interventions like a change in dietary pattern may not only be preventative but also therapeutic, as we have found for many other chronic diseases. The concept of using "food as medicine" was proposed by Hippocrates, the Father of Medicine, and it is about time that the science catches up to his insight. We need public funding to support research in this area, as the private sector does not have a financial incentive to invest in research into these types of treatments. Lifestyle interventions offer the greatest potential to curb the course and financial burden of this disease.

As it was once said, "The definition of insanity is doing something over and over again and expecting a different result." The many failed trials in the past decades suggest that we ought to do something different. Given the unreliability of the animal models and the poor candidacy of amyloid and tau as drug targets, we recommend the Council to focus on supporting research for human-relevant models, lifestyle risk factors as targets, and non-pharmacological lifestyle interventions for the therapeutic development pipeline. These conceptual paradigm shifts may be our only promising hope to develop effective interventions to prevent or reverse AD/ADRD in our nation by 2025.

Thank you for your attention to these comments. I can be reached using the information below to answer any questions or discuss these comments further.

NOTE

  1. Parrott MD, et al. Whole-food diet worsened cognitive dysfunction in an Alzheimer's disease mouse model. Neurobiol Aging. 2015 Jan;36(1):90-9.

M. Sharp  |  01-19-2018

Thank you once again for this opportunity to provide input from the perspective of a "related dementia". I am the Program Manager for The Association for Frontotemporal Degeneration.

I look forward to the presentations this afternoon and hope my comments are not preemptively redundant or too off target but I would like to offer some input on drug development in FTD and let everyone know about a new funding opportunity from AFTD.

Designing studies and clinical trials in FTD is a tremendous challenge for many reasons. For starters, as a rare disease, it is hard to recruit enough participants to sample and produce statistically significant results. Also there are multiple pathologies in FTD that underlay a confusing mix of clinical presentations and symptoms. This makes it exceedingly difficult to identify clinically meaningful end-points by which to measure the effectiveness of a treatment. And that is just scratching the surfacing. Basically, the closer you look at designing trials and studies in FTD the more complexity you see. Because of the many and varied challenges AFTD's approach to maximize the success of our research efforts has been to work collaboratively with other organizations and combine resources to find creative solutions. For example The Frontotemporal Study Group is an AFTD program that brings together stakeholders from industry, academia, NIH, FDA and independent foundations who share a common interest in accelerating the development of effective treatments for FTD and related disorders. And last spring AFTD launched the FTD Disorders Registry with our partner the Bluefield Project. There are now over a thousand people registered and ready to inform pharmaceutical companies, academic researchers, regulatory and policy groups about patient-focused trial design and cultivate a collaborative environment for drug development.

Finally, I would like to let everyone know that AFTD has recently announced a new pilot grant to support the development of nonpharmacological therapies for FTD. We have recently released a request for proposals for nonpharmacological interventions and tools with the potential to have a positive impact on the quality of life for persons diagnosed and their families. It is a one year grant up to $60,000 and is open to US and international investigators. There is more information on our website and anyone who is interested is welcome to ask me for more details.


M. Brown-Ekeogu  |  01-19-2018

I'm 51 years old and taking care of my husband who was diagnosed with Frontal Temporal Degeneration in the spring 2017. He is slowly degressing and because we had just purchased a home a few years before his diagnosis I'm the primary caretaker and provider for the family. I live in the state of GA where I was advised we don't have any program in place or funding in place for the spouse to stay at home and care for their loved one. I have exhausted every dime I have in paying someone to be home with him most of the time I'm at work. We NEED to provide an avenue for caregivers to be compensated to stay at home with their loved ones. The stress of working and worrying about your loved one is unbearable which can cause an additional crisis in the home. My husband is only 64 and we never expected this as I'm sure no one else did. I'm crying out for myself as well as other worn caregivers for help to allow us to help our loved ones have the best life possible while fighting this dreadful disease.


M. Ellenbogen  |  01-19-2018

I would like to make you aware of a new trend I am starting to see in the US. This problem that has been created by the opioid crisis. I have now heard of many folks who were receiving pain medications and had dementia are starting to be declined for future pain medications renewal. New folks who need medications are not able to get them. Many people living with dementia are living in pain and are unable to express themselves. This issue has been getting worse and ran into two more families who spoke about this yesterday. Now these folks are suffering even more and this must change quickly. It was always believed to give those with dementia some pain meds to insure they were not living in pain or suffering. Now they are saying that this could lead to more confusion and possible risk of falling. So instead they prefer to cover their ass and deny those folks medications that are needed for comfort in their last few years. Can anything be done.


M. Hogan  |  01-19-2018

Good afternoon. Thank you for the opportunity to once again address the Council. I am a steering committee member of the NTG of which Dr. Janicki is Co-Chair. I wish to follow up on his remarks.

The NTG was formed late in 2010. Our primary goal at the time was to ensure that individuals with ID and their families were included in the National Plan to address AD and other dementias. We have been present at almost all of the meetings since the Council first met, advocating for this vulnerable group of individuals. Some of you at this table have come to expect that we will be present and vocal regarding the needs of those with ID and dementia and their caregivers and/or care partners.

We come to this table quarterly with specific requests for the population we represent. We come to minimize the isolation often experienced by individuals with ID and the continued tendency to offer parallel opportunities that are separate and not always equal.

I believe that it is important that you come to know who we are and recognize the efforts of the NTG outside of this setting. As a small grass roots organization we are focused on increasing support and improving caregiving standards for those with ID, and their families. To this end have done the following:

  • Produced an early detection-screening instrument along with a user manual (NTG-EDSD) that is now available on the NTG website in 13 languages
  • Identified and disseminated Best Practice guidelines and Community Supports guidelines
  • Created a Health practitioner assessment protocol that was published in the Mayo Clinic Proceedings
  • Provided Health Advocacy guidelines, critical for assuring improved medical care
  • Assisted CARF with national program standards for dementia care in rehabilitation facilities
  • Designed a National training curriculum-Dementia Capable Care of Adults with Intellectual Disabilities and Dementia (with Train-the-Trainer component) that has been offered across the US
  • Are partnering with colleagues in Canada on a training curriculum
  • Offer on-going training and webinars for Professionals and Family Members
  • Were instrumental in helping to organize an International Summit on ID and Dementia that was held in Glasgow, Scotland in October of 2016
  • Subsequently published articles in professional journals related to ID and dementia ( from nomenclature to end of life care)
  • Continue to meet with professional organizations to offer technical assistance
  • Explore grant based innovative programs including the exploration of telehealth and tools for dementia assessment with an electronic data storage component
  • Partner with organizations who are recipients of grants from the US Administration on Community Living to insure that their capacity to serve this population increases and standards of care improve
  • Interact with NASDDDS, NASUAD, NACDD regarding state activities
  • Present at National Conferences including the National HCBS Conference to increase awareness of the needs of those with ID and dementia and their family members
  • Represented those with ID and dementia and their caregivers at The National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers
  • Partner with The Arc, NDSS, Alzheimer's Association on trainings and publications and with NDSS and the National Alliance on Caregiving on the planning of an upcoming Adult Down Syndrome Summit to be held in Arlington, VA in April 2018

And most importantly, for me personally, is the provision of information to families and the hosting of a monthly online family support group for family members from across the US. We are now assisting other organizations that are trying to develop family support options on a more localized level. No caregiver deserves to make this journey in isolation.

As people age and are at increased risk for AD or other dementia, the demands that lie ahead are many and partnerships critical for success. The NTG wishes to reach out and support the efforts of the NAPA Council as you define your next steps. We are hopeful that you will be inclusive of all people in your future plans, that you will make a sincere effort to better understand this special population, that you will take note of our appeals and reflect on what life must be like for those who have faced a lifetime of challenges.

We, in turn, at the NTG can assure you that we will continue to remain dedicated to improving quality of life and quality of care for a population that is often undervalued and underserved and who are very often cared for by a workforce that is undervalued as well. We can and must do better.


M. Janicki  |  01-18-2018

I and Dr. Seth Keller are the co-chairs of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG). The NTG is an affiliate of the American Academy of Developmental Medicine and Dentistry and is associated with the Rehabilitation Research and Training Center on Developmental Disabilities and Health at the University of Illinois at Chicago (http://www.aadmd.org/ntg).

While we were recently discussing the role of the NTG with respect to the Council, it struck us that many Council members may not know why we are here and why we make comments to the Council -- and what are our 'wants'. The NTG was formed in 2010, just before the passage of the National Alzheimer's Plan Act, with a stated mission to advocate for people with intellectual disability affected by dementia and their families and other caregivers. When the NAPA Council came into being, it was opportune for us to have a voice at the national level on behalf of a critical segment of adults affected by Alzheimer's disease and other neurocognitive conditions resulting in dementia.

There are many causes of intellectual disability, some genetic, some due to disease, and some social or environmental. Among the genetic causes, Down syndrome is the one most commonly associated with dementia as adults with Down syndrome are at high risk of Alzheimer's disease and generally manifest early onset dementia. In the United States, it is generally acknowledged that although most persons with an intellectual disability are affected by dementia to the same degree as other adults in the general population, some may be affected earlier and at a greater rate.

The Alzheimer's Association estimates that currently some 5.2 million Americans are affected by dementia, many of whom have Alzheimer's disease. Of these, some 200,000 affected adults are under the age of 65. This includes adults with Down syndrome, many of who are among those 200,000 adults affected with 'early-onset dementia'. Generally, it is believed that about 6% of adults with an intellectual disability will be affected by some form of dementia after the age of 60 (with the percentage increasing with age). For adults with Down syndrome, at least 25% will be affected with dementia after age 40 and at least 50 to 70% will be affected with dementia after age 60. With respect to numbers, it has been projected that there may be at least 54,000 adults with an intellectual disability and mild cognitive impairment (MCI) or dementia in the United States, and that the number of such adults affected by dementia would most likely triple over the coming years.1 Studies have also shown that some 33,000 adults with intellectual and developmental disabilities and dementia are currently living at home with older or other family caregivers. While the number may seem modest with respect to the 5.2 million overall cited by the Alzheimer's Association, these 54,000 comprise a group with high dependencies and a high impact on caregivers, many of whom may have been providing lifelong care. They also represent adults whose needs will have an impact on national long-term care resources as they are Medicaid eligible.

With increased life expectancy and greater numbers of aging people due to the 'baby boom' effect, the number of older at-risk adults will increase significantly over the next twenty years -- as will the prevalence of dementia. The Alzheimer's Association projects that the number of older persons affected by Alzheimer's disease will to about 7.7 million by 2030. This growth also will be mirrored among older adults with an intellectual disability.

There are many similarities in needs between adults with intellectual disability affected by dementia and other adults similarly affected. Both need targeted early detection, diagnostic services, counseling, aid with planning for the future, housing assistance, care management, supports for caregivers, and other special services as dementia progresses.

There are, however, some differences as well. The NTG and other intellectual disability organizations, such as the American Association on Intellectual and Developmental Disabilities, National Down Syndrome Society and The Arc, have noted that

  • After a lifetime of coping with and adapting to a lifelong disability, dementia can have a particularly devastating impact on adults with an intellectual disability as well as on their families, friends, housemates, and services' providers who have been providing key long-term supports and care.
  • Primary care and supports for adults with an intellectual disability affected by dementia can and should be provided within the community and that appropriate services, when available, can preclude inappropriate institutional admissions.
  • State and local developmental disabilities' agencies, the primary resources of specialized services, can help by planning and budgeting for supports of in-community care of adults with an intellectual disability affected by dementia, including help for their family and other caregivers.
  • Specialized assessment and diagnostic resources are effective in identifying dementia among adults with an intellectual disability and their use should be expanded.
  • Knowledge and training in late-life problems, including dementia, of adults with an intellectual disability are often lacking among primary care health providers in community practice and this deficit can be an impediment to early detection and provision of appropriate interventions.
  • Specialized trainings instituted nationally, using workshops, webinars, and other teaching methods, can advance the knowledge and skills among health and social care workers and clinicians working with adults with an intellectual disability affected by dementia.

Now, to the point of why we appear before the Council. We believe that these distinctness areas deserve due consideration by the Advisory Council on Alzheimer's Research, Care, and Services and their remedies warrant inclusion in the National Plan updates -- especially as this group is one of the 'populations disproportionally affected' noted in the original National Plan.2 Further, we ask that the Council recognize that dementia has a particularly devastating impact on people with an intellectual disability and their friends, families and the staff who may be involved with them as advocates and caregivers -- and give this population and its needs due consideration in the Council's deliberations. The National Task Group believes that the federal Council should continue to include -- and expand on -- concerns and considerations for people with intellectual disabilities in its annual updates of the National Plan. To this end, the National Task Group stands ready to assist and contribute to such efforts.

NOTES

  1. 'My Thinker's Not Working': A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports. National Task Group on Intellectual Disabilities and Dementia Practice. (2012). http://www.aadmd.org/ntg/thinker
  2. National Plan to Address Alzheimer's Disease. US Department of Health and Human Services. (2012).

S. Hall  |  01-16-2018

I am a care partner and advocate. My husband has frontotemporal degeneration. I am active in the FTD community. This population is often overlooked due to their young age. Programs and services for those with FTD and their care partners are very difficult to find. Most organizations for the aged population do not offer anything for someone under the age of 65.This population is often rejected from memory care facilities due to their age and diagnosis. If they are admitted, they are often asked to leave.

There needs to be a national certification for those working in memory care so they are trained to deal with ALL dementias and ALL symptoms of all dementias. The stress on these younger families is enormous. Many still have young children at home. The cost of their care is twice that of Alzheimer's, which has been shown in a recently published AFTD financial burden study. This leaves younger families financially destitute.

Care partners of those diagnosed at a young age need real respite programs. They often have to work while hiring help at home, as their spouse has left their job and is on SSDI with a 2 year wait for Medicare, so they need to fill that gap of insurance. They work 2 full time jobs, one to keep a roof over their heads and insurance for the family, and one caring for a spouse with dementia.

We are losing too many care partners to stress and onset of stress related diseases at a much younger age. We must all remember that some related dementias are not in an aged population and make programs and services available for this community.


N. Satyadev  |  01-10-2018

I wanted to inform you of two projects my organization is working on that I believe are relevant to the work of this council.

Firstly, our organization was recently approved to launch our low-cost caregiver respite program in partnership with the USC Leonard Davis School of Gerontology. I plan to keep the council informed of developments with this program, but for now more information about our idea can be found here: http://www.theyouthmovement.org/#/futureOfCare.

Secondly, our organization is leading efforts to pass a California Care Corps Act, building on the framework proposed by Congresswoman Michelle Lujan-Grisham in her National Care Corps Act, which was originally introduced in the 114th Congress and is being reintroduced in the current Congress as a Demo Act. We believe that this legislation is critical to offering care solutions beyond the longstanding IHSS allocations and will help foster an inter-generational culture.

Finally, I want to take a moment to commend the work of Dementia Friendly America as their fast-paced team has been critical to advancing America towards a society in which those diagnosed with dementia feel free to participate in communal activities. Thank you for the time.


C. Johnson  |  01-10-2018

My husband was recently diagnosed with Frontal Temporal Dementia/Degeneration. We have gone from Dr to Dr and realize that few know or have even heard of the horrible disease that is robbing the lives of young men and women. Leaving children to grow without a parent. This disease now falls under the umbrella of Alzheimers but it is not Alzheimers.

I fear there are men and women in our prisons that have this also as it causes the afflicted to behave irrationally. Not only my husband but my now deceased brother, who happened to be one of the largest land owners in California, a highly noted architect was locked up in a horrible county psychiatric hospital because he was walking down the highway and became overly excited trying to explain to the officer he was only going home. You see he also had aphasia that is common with this disease. My brother was transported to hospital and detained on a 5150 in this horrible place until I could get to California and get his attorneys to help me get him out. In fact the hearing officer was very surprised that he had $40 million in cash at his disposal as she thought he was homeless! Homeless with a pair of $1200 Italian loafers on..I'm telling you this because we need to educate Doctors, hospitals, judges and everyone on this disease.


K. Brinkerhoff  |  01-07-2018

I have bvFTD, I don't think that people have an understanding that many with this dementia have a brain that tells them to keep active to walk. Nursing Homes think this means running away. So they lock them down and over medicate them to keep them from leaving. This is destructive to them trying to control a brain that tells them to walk. Instead I say why can't a walking path or the ability to take people with FTD to a walking path not made a part of a clients right. Secondly if no walking path is available have dance classes, walks around the facility or exercise machines such at treadmills or walking machines that can give these people a way to let out that pent up energy the FTD provides you with. Isn't it wonderful there is a dementia that will keep people active and healthy? This is my biggest fear being locked up and medicated in a nursing home and having to hang up my walking shoes because no one will take the time to understand my kind of dementia.

Next I personally believe there are medications out there that can target the part of the brain that is degenerating in the FTD patient. I think continue to look for a cure but if there is a medication that might stimulate that part of the brain or whatever lets find it and make it standard practice for patients with FTD. Maybe its time to find out what kind of medications FTD patients are on and see if some patients are doing better than others and if it might be a medication making the difference. I have seen what many FTD patients are on and it is different from what I am on. So I ask myself is the answer getting a fantastic neurologist over getting the right medication. So lets find a standard if there is one and I believe there is.


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NOVEMBER 2017 COMMENTS

K. Kero  |  11-10-2017

I'm writing bring a broken link to your attention. On the Agency Reports page at: https://aspe.hhs.gov/agency-reports none of the AoA website links connect to any reports. It looks like they would be a good source of information, I hope they are repaired soon!

ANSWER:

Thanks for letting us know about the broken links. Most of the information on that page is sent to us by other agencies/organizations, and they do not always alert us when a report has been removed or the link changed. If the new URLs can be located for these reports, we change them on the page.

UPDATE (January 2018): The list of Administration for Community Living and Administration on Aging reports has been updated at https://aspe.hhs.gov/agency-reports#ACL.


J. Denosky  |  11-08-2017

I took a look at your summary "research recommendations" document (https://aspe.hhs.gov/system/files/pdf/258446/Mtg26-Slides4.pdf). I must admit to being surprised that I could not find one concrete suggestion to help caretakers of Dementia patients. The level of abstraction of the suggestions in extraordinary.

No direct mention of mobility, transfer, ADLs, nursing care issues in lock-up dementia wards, Hospice and Dementia, Dementia-related medical conditions, financial issues of Dementia, low CNA pay, caregiver isolation and depression, nursing home costs, Medicaid costs and spend-down, .... I could go on.

I respect researchers, epidemiological studies, the need for standards, and I understand the need for best practices, etc. But ALL my suggestions were apparently completely ignored. If you have nurse-advocate stakeholders present, they must have been very quiet.

As a former nurse of Dementia patients, I am forced to conclude based on your summary recommendations that your conference is of little direct value to caregivers or patients, and too distant from the actual problems posed by Dementia patients to do much good. I find this very disappointing. I hope you and colleagues will some day actually spend time with patients so you can understand the range of issues a conference on Dementia and caretakers should cover. Your focus is far too narrow.

ANSWER:

The Summit recommendations were summarized at the October 27 NAPA Advisory Council meeting. That presentation, both in slides and video, is available on the Summit website at https://aspe.hhs.gov/national-research-summit-care-services-and-supports-persons-dementia-and-their-caregivers-recommendations. The Summit chairs are currently organizing the recommendations into groups, and they will soon be available at that same link. If you are on the NAPA Listserv, you will be alerted when that information is online.

The recommendations that the chairs are organizing ARE in material available on the Summit website. You would, however, need to glean them from looking on the following pages:


L. Gerdner  |  11-03-2017

I am the author of the book, "Musical Memories." I would like to notify your group about the recent publication of this book by donating a copy for your review.

Description:

Gabrielle loves ballet. When her grandmother presents her with tickets to Cinderella, she can hardly wait. But outside the theater after the magical performance, Gabrielle is frightened and confused by Grandmother's strange behavior. Gabrielle's mother explains that Grandmother has Alzheimer's disease. Alzheimer's disease sometimes makes Grandmother forgetful, anxious, and agitated, but Gabrielle soon discovers that through music, she and Grandmother can share memories and make new ones. One night, Grandmother wakes the house in fear of an intruder, and cannot be calmed. But Gabrielle remembers a way to break through Grandmother's fear and help her relax again.

I have attached a journal article that describes the background information that served as the impetus for "Musical Memories.".

I am also providing you with the link for a website devoted to "Musical Memories." The sited includes free downloadable resources for Health Care Professions, Family Caregivers / Teachers, and Kids; to enhance the learning experience of the book. Resources for caregivers includes a 50-based evidence-based protocol for the use of individualized music that is currently in its 5th edition and was originally published in the early 1990s

https://gerdnerlinda.wixsite.com/musicalmemories

Please provide the name of the person I should direct the mailing to, along with the address. I want to make sure it gets routed to the correct person.

Thank you for your time and consideration regarding this request.

ATTACHMENT:

Musical Memories: Translating Evidence-Based Gerontological Nursing Into a Children's Picture Book, Journal of Gerontological Nursing, Vol. 39, No. 1, 2013 [Available as a separate link: https://aspe.hhs.gov/sites/default/files/private/pdf/258546/cmtach-LG1.pdf]


K. Jameson  |  11-02-2017

Thank you for your ongoing emails to us, they are much appreciated.

I am a bit curious, because not all dementias have a pathology related to AD...

Can you tell me, is there any movement afoot among the NAPA participants to change the phrase most commonly used, "Alzheimer's and related dementias," to a more accurate all-inclusive and shorter single word, such as "Dementias," which obviously includes forms such as AD as well as many others.

Or, maybe to a little less-better version, but still more correct: "Alzheimer's and other Dementias"? Note, just the single word swap.

A simple change would mean a great deal to those living with non-AD dementia.

Your thoughts and insights would be welcome. Thank you again.


OCTOBER 2017 COMMENTS

J. Imm  |  10-26-2017

Today is October 26, I am reaching out to you again to give Mr. Ellenbogen an opportunity to speak at the NAPA October 27 conference. Will you provide him with such an opportunity via conference call?

==========

From: J. Imm

[Link to comments -- J. Imm]


M. Hogan  |  10-23-2017

Thank you for the opportunity to once again address the Advisory Council. In 2007 my brother was diagnosed with AD. He also had Down syndrome. He died in 2010 of complications of aspiration pneumonia at the age of 49. Since that time I have been dedicated to assuring that folks with these co-occurring conditions receive the care and attention that they require and deserve and that family members and care partners have the opportunity to access the support required to maintain quality of life for their family member. I have been a presence at the Advisory Council meetings since 2011, am a member of the NTG and have worked closely with the NDSS on their projects on DS, aging, and AD. I have continued to develop close working relationships with both national and state Alzheimer's Associations and have benefitted from their training, collaboration with the NTG as well as their extensive family resources.

I would like to welcome Dr. Gitlan and the other new members to the Council. In the past we have shared a positive working relationship with Council members and I look forward to continuing this relationship in the days ahead. I wish you well in your new role.

Last week I was one of three trainers who presented the NTG Dementia Capable Care Curriculum at a three-day workshop in Lincoln, RI. Our audience included an OT, Psychologist, Nurses, Social Workers, Agency and Direct Care Professionals and Family Members. They were most receptive to the information presented and left feeling informed and empowered. We have made a commitment to continued support of all trainees as they return to their work settings and attempt to change the culture surrounding dementia care in their communities.

I agreed to bring to your attention one of the challenges and other concerns that many of these individuals expressed. They noted in particular the concept of active treatment. Given the nature of ADRD there is a mismatch between active treatment requirements for funding and the decline of their community members. They look to CMS and ACL for guidance in this arena and are hopeful that you will offer direction in the very near future. Many expressed concern about the inconsistent translation of Federal directives at the state and local levels and the lack of availability of support and services from state to state. How can care be more consistently organized across our communities nationally and Medicaid dollars shared more equally? What will happen if budgets cuts occur in the near future and care of individuals is reduced or eliminated? Hopefully you can help address these questions for dedicated caregivers across the nation.

I once again wish to request that a morning Council Meeting session be dedicated to both the accomplishments that have taken place in the ID community since the inception of the National Plan to address Alzheimer's disease along with the many challenges that remain. It seems that the time is right with the transition of Council leadership and members. Such a discussion will enable the new members to understand the challenges faced by this special population, some of whom are at increased risk for the onset of AD at an early age.

I also wish to continue my appeal to include those with ID in regional projects that explore the improvement of diagnosis, care coordination and support services. As noted previously, separate does not always translate to equal. Disparities continue to exist and creative opportunities not always inclusive. Leadership is required in order to further facilitate communication, collaboration and inclusion.

For the past 4 years I have talked of the crises faced by aging caregivers and have shared the story of Betty, age 88, Frank, age 93 and their son Richard, age 51. This family has represented the challenges faced by life longcaregivers who have had limited access to support services and a work force that lacked appropriate knowledge and training in day programs. They were faced with few options when Richard was no longer safe in their family home. Betty and Frank have remained dedicated to and advocated for Richard as AD has progressed. I am deeply saddened to report that Richard died of complications of aspiration pneumonia on August 31, 2017. He was 51 years old.

Photo of Richard (last name unknown).
Richard Date of Death: 8/31/17 Age: 51

Richard led a rich and active life prior to the onset and decline associated with AD. He loved to work, bowl, compete in the Special Olympics, watch football and cheer for his favorite college team. He loved to be out and about in the communities in which they lived and was a garrulous fellow who thrived on social interaction. Betty and Frank are experiencing a profound sense of loss as are Richard's peers, one of whom recently comforted them with these profound words, "I cry for you." At Richard's burial with family members adorned in their red shirts, each was awarded a Special Olympic medal as they quietly sang the team's fight song.

So fight we must to eradicate this disease in those with Down syndrome as well as those in the general population who face this great battle. I am hopeful that you will be champions for a group of people who know how to love, show empathy and compassion, have great value in their communities and help to give meaning to life.

Betty and Frank have spent countless hours being comforted by photos and newspaper clippings that have included milestones that Richard marked. The most profound milestone came from an aging article in a now defunct local paper that included a photo of a 5 year-old boy with the byline "Retarded Youth Needs a Home". 45 years later Betty and Frank celebrate the gift of Richard's life, as they grieve his recent passage. He did indeed find home.


A. Helsing  |  10-20-2017

I am excited to be here at the Advisory Council October Meeting with you all today. Thank you so much for having me. The National Down Syndrome Society, the leading human rights organization for all individuals with Down syndrome, is excited to announce the publication of our newest resource for the Down syndrome community! During the first week of November in honor of National Family Caregivers Month, NDSS will introduce "Alzheimer's Disease & Down Syndrome: a Practical Guidebook for Caregivers"! This booklet was written to help empower caregivers and families with knowledge and guidance about the connection between Down syndrome and Alzheimer's disease, how to carefully and thoughtfully evaluate changes that may be observed with aging and how to adapt and thrive within an ever-changing caregiving role when a diagnosis is made. People with Down syndrome are now going to college, getting competitive jobs, getting married and living full lives and we know this guide will be an amazing resource for the caregivers of those with Down syndrome as they age.

For more information, please visit http://www.ndss.org/.


M. Sharp  |  10-20-2017

On behalf of AFTD I want to welcome the new council members and thank you all for giving your, time, experience and passion to help NAPA achieve its goal of ending dementia. I am the Program Manager for The Association for Frontotemporal Degeneration and have been attending these quarterly meetings since 2012 to represent the related dementia -- FTD.

I also want to comment on the research recommendations from the Care and Services Summit at NIH last week. I remain in awe of how well the summit accomplished the herculean task of compiling an enormous amount of information on existing dementia care and services and condensing it all into a comprehensive set of recommendations that will move the field forward if given the appropriate support. Identifying critical themes and issues that cut across all the topic areas was key to organizing the vast amount of information on dementia care and services that already exists. All the sessions addressed the cross-cutting themes to some degree but whether and when the word dementia applied to the full range of clinical presentations depended largely on the expertise of the presenters. That is not surprising and it is certainly appropriate that care and services match the demand, which by and large means Alzheimer's disease. However, if this natural tendency toward serving the largest common denominator is not consciously resisted nothing much will change for those coping with FTD or any other non-Alzheimer's dementia who will continue to struggle to find the care or services they need.

This issue was partially addressed by the cross-cutting theme of etiology and disease stage but those terms do not address the entire problem. A more comprehensive theme is clinical heterogeneity. Clinical heterogeneity includes etiology and disease stage but also encompasses age of onset, abilities and level of functioning prior to onset and other factors that affect symptomatology and disease trajectory. Simply put, clinical heterogeneity describes the person with dementia and not just their disease, and without explicit attention to the individual differences of the person with dementia, care and services will naturally revert to a one size fits all model that doesn't actually fit everyone.

I strongly suggest that the cross-cutting theme "etiology and disease-stage" be replaced with "clinical heterogeneity" as that term will more effectively guide the development of dementia care and services that address the full range of dementia symptoms.


I. Kremer  |  10-20-2017

This is a day for thanks and a day to look ahead.

We are thankful for those who have served the Advisory Council so ably over the past six years, and for those who bring new perspectives to Advisory Council as their terms begin.

We are thankful to those who contributed to the successful first National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers, including summit co-chairs L. Gitlin and K. Maslow; the federal agencies and non-governmental partners; the presenters, attendees and others who contributed content and generated research recommendations; and we are especially thankful for the people living with dementia and the carerswho shaped the summit through service on the steering committee and advisory groups, and through decades of participation in research and testimony about their experiences, expectations, wants, needs, a human rights. [https://aspe.hhs.gov/national-research-summit-care-services-and-supports-persons-dementia-and-their-caregivers]

We are thankful for the NIH's 2019 Bypass Budget continuing to set an ambitious course grounded in solid science toward our national goal of preventing and effectively treating dementia by 2025.

We are thankful for elected leaders who have responded with resources to fuel the science roadmap forward.

We are thankful for ACL, CDC, CMS, FDA, HRSA, VA and other federal agencies that push to innovate and deliver improvements in quality of life.

We are thankful for ASPE and all who others who ensure not only that the National Plan says the right things, but that it drives both sustained progress and meaningful accountability inside and outside government.

All which makes us thankful also makes us understand that far more remains to be done, that we can and must act with even more urgency for more rapid, more enduring, more inclusive and more transformative progress. With this in mind, I would urge the NAPA Advisory Council to act swiftly to:

  • Adopt a national quality of life goal, comparable to the 2025 goal for prevention and effective treatment in its capacity to galvanize national attention and resources behind rapid, enduring, inclusive and transformational progress.
  • Establish an interagency working group with significant non-governmental expert representation to develop a formal research, policy and practice road map -- with milestones and metrics -- toward achieving that quality of life goal. The working group should begin with (but not be limited to) a re-examination of the thoughtful, remarkable, and important work presented by M. Baumgart at the January 25, 2016 Advisory Council meeting: Milestones for Goals 2 and 3 of the National Alzheimer's Plan. [https://aspe.hhs.gov/advisory-council-january-2016-meeting-presentation-goal-milestones]
  • Charge the Dementia Care Summit steering committee with developing a series of sequenced post-summit activities to carry forward the work begun in the pre-summits and the summit itself. Among other priorities, this should include completing work -- before the NAPA Advisory Council finalizes its 2018 National Plan recommendations -- on the summit's second formal anticipated outcome: "Identification of evidence-based programs, strategies, and approaches that can be used now to improve care and services."
  • Update the position, adopted by the non-federal members of the Advisory Council a number of years ago, regarding the annual amount of NIH research funding needed to achieve the 2025 goal for prevention and effective treatment.

In closing, I offer my thanks to others making public comments today and my appreciation to Advisory Council members and staff who give of their minds and hearts beyond what words can express. I offer my hope to all those living with dementia and their loved ones that they will be heard, heeded, and healed through the work we all do together.


M. Janicki  |  10-18-2017

I and Dr. S. Keller are the co-chairs of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG), a group formed in 2010 with a mission to advocate for people with intellectual disability and their families and other caregivers when an adult with intellectual disability is affected by dementia (http://www.aadmd.org/ntg). The NTG is an affiliate of the American Academy of Developmental Medicine and Dentistry and is associated with the Rehabilitation Research and Training Center on Developmental Disabilities and Health at the University of Illinois at Chicago.

We wish to use this opportunity to congratulate and welcome Dr. Gitlin as the incoming Chair of the NAPA Advisory Council on Alzheimer's Research, Care and Services. We look forward to her two-year term and contributions to the welfare of people affected by dementia.

We also wish to commend the Council on the 2017 Plan Update and its depth and breadth, as well as thoughtful recommendations. The discussion of the partner provisions, as well as the federal contributions, is making this effort truly a national plan. It was good to see the efforts being undertaken to expand the capacity of the nation's workforce to address Alzheimer's diseases and other conditions contributing to the occurrence of dementia. In that vein, we would to note the contributions of the National Task Group to the education efforts being undertaken. One of our aims when we were formed was to help inform and educate all components of the provider community delivering services to people with intellectual disability, as well as their caregivers. To this end, we developed a national curriculum on dementia and Intellectual disability composed of 20 distinct content modules. I am pleased to report that since 2015 to the present, the NTG has drawn from this curriculum to provide over 30 two-day workshops on dementia and intellectual disability across the US. All told some 1300 persons were trained, including some 790 professionals who also provide some form of training at their agencies or in their communities and attended our 'third-day trainer day'. Attendees have included direct support workers, clinicians, administrators, family caregivers, and a range of professionals. The workshops were held in 17 states with an average site registration of about 50 persons. Post-workshop evaluations have been positive and encouraging -- most attendees noted that the found that workshops highly beneficial and would recommend the training to others. Currently, we have about a dozen additional workshops in the pipeline into early 2018. I am also pleased to report that we are having discussions with HRSA over inclusion of a module on intellectual disability within the GWEPs national training activities on workforce enhancement.

At the last two Council meetings, we reported on the International Summit on Intellectual Disability and Dementia that was held in October 2016 in Scotland, and which came about from a partnership between the NTG, the University of Illinois at Chicago, and the University of Stirling(in Scotland). We are pleased to report that since the last meeting, an additional number of papers have been published.

  • One of the papers, Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to Nomenclature, has appeared in the October 2017 issue of the American Association on Intellectual and Developmental Disabilities' journal, Intellectual and Developmental Disabilities.
  • Another, the Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to End-of-life Care in Advanced Dementia, has appeared in the most recent issue of the Journal of Applied Research in Intellectual Disability.

Also, several other papers have been accepted for publication.

  • One, Defining Advanced Dementia in People with Down Syndrome and Other Intellectual Disabilities: Consensus Statement of the International Summit on Intellectual Disability and Dementia, has been accepted for publication in the Journal of Palliative Medicine.
  • Another, a Summative Report of the International Summit on Intellectual Disability and Dementia, has been accepted for publication by The Gerontologist.
  • Lastly, a Consensus Statement of the International Summit on Intellectual Disability and Dementia on Valuing the Perspectives of Persons with Intellectual Disability, has been accepted for publication by the Journal of Intellectual Disabilities.

Each of these papers contains a series of recommendations that would address issues raised in the papers. It is our hope that the Council will consider the substance and recommendations of these reports and papers at future meetings and when constructing next year's update of the National Plan to Address Alzheimer's Disease.

These reports and publications are available from us and posted on the NTG website -- http://www.aadmd.org/ntg.


J. Ransdell  |  10-18-2017

Thank you for the opportunity to address the Council. I am the mother of a 43-year-old gentleman who has Down syndrome, Autism and Alzheimer's. It is because of him that I stand before you today. My son is one of more than 250,000 people with Down syndrome living in the United States. As they age, many like him,are susceptible to Alzheimer's. Families caring for and supporting people with Down syndrome and Alzheimer's need the Council's recognition and support and must be given due consideration in the National Plan.

Photo of Matt Ransdell.
M. Ransdell, 43-year-old gentleman from Florida who has Down syndrome, Autism and Alzheimer's.

We first suspected that he was developing Alzheimer's approximately three years ago. He exhibited some signs that could have been attributed to premature aging that is often seen in people with Down syndrome. Unfortunately, he continued to have symptoms that ultimately led his health-care providers to diagnose Alzheimer's. At first, I didn't know what to do; I didn't know where to turn for information and didn't know which of his doctors could best advise me.

I eventually connected with the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) and will forever be grateful for what I have learned to help me better support him on this journey. As we moved forward I recalled how alone I felt when he was born and we were told he had Down syndrome. Those memories got me thinking about other families who were getting Alzheimer's diagnoses and were experiencing those same feelings of isolation. Because of the opportunity I was given through the NTG, I dusted off my advocacy hat, and went to work to connect families around the country on this same journey.

Because of the dedication of the NTG volunteers, my co-chair, M. Hogan and I have been able to reach out and support numerous families around our great nation. The stories they share are all different, but similar in various ways. We, too often, listen as families express frustration that they can't find doctors or other service providers who are knowledgeable of aging with Down syndrome or the connection of Down syndrome with Alzheimer's. We have been able to offer them opportunities to learn more about this disease so that they can educate the health-care providers working with their loved ones.

As we have provided this support and connection for families we have learned:

  • Although Alzheimer's in the general population can be like Alzheimer's in a person with Down syndrome, there are some unique differences.
  • There is a critical need for information to be readily available to families on all aspects of Alzheimer's and Down syndrome.
  • Families want to connect with other families who are navigating the Down syndrome and Alzheimer's journey.
  • There is a need for more support opportunities for families - we receive inquiries and referrals every week and sometimes are overwhelmed by the volume of the need.

I am pleased to say that in the past 18 months, through the NTG we have supported many families with our monthly national online support group and ongoing individual connections, and we have reached hundreds, perhaps thousands of families and professionals with our bi-monthly Caregiver Newsletter. And, I'm pleased to announce that next April, in partnership with the National Down Syndrome Society and the National Alliance for Caregiving we are hosting a Down syndrome Adult Summit in which we will offer sessions related to aging with Down syndrome, as well as Down syndrome and Alzheimer's.

Thank you for the opportunity to speak with you today and for including people with intellectual disabilities (and especially those with Down syndrome) in the National Plan. I encourage you:

  • In the next plan update:
    • To advocate the inclusion of people with Down syndrome and Alzheimer's in all research projects focused on Dementia care, services and support;
    • To advocate for state Developmental Disability programs to recognize the changes that occur, and the additional supports that are necessary when a person has an intellectual disability and Alzheimer's; and
    • To recognize more fully, the contributions that voluntary groups, such as the NTG, provide to help achieve the goals in accordance with the national plan. Such recognition will truly reflect your work to produce and uphold a national plan that is inclusive and acknowledges the efforts of non-governmental groups;
  • To continue a dialogue with volunteers, such as those within the NTG, who support people with Down syndrome and Alzheimer's so that we can provide the best possible care to this special population.

J. Imm  |  10-17-2017

I am with Responsible for Equality And Liberty (R.E.A.L.).

Since there was no conference call availability for Alzheimer's Disease activist M. Ellenbogen to speak on the October 16/17 Dementia Care Summit, would NAPA be willing to provide him conference call ability to speak at the October 27 Advisory Council Meeting #26? https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services-meetings#Oct2017

R.E.A.L. believes that NAPA has the capability and technological resources to accept comments from speakers with Alzheimer's Disease and dementia via conference call. R.E.A.L. urges NAPA to make such flexibility to accommodate these voices that need to be heard.

Specifically, R.E.A.L. calls for NAPA to permit M. Ellenbogen, a long time activist for those with Alzheimer's Disease to speak, as his own Alzheimer's Disease and physical limitations make such in-person travel to the Dementia Care Summit impossible.

Please give him this opportunity.


J. Imm  |  10-17-2017

I am, with volunteer human rights activists, Responsible for Equality And Liberty (R.E.A.L.).

R.E.A.L. believes that NAPA has the capability and technological resources to accept comments from speakers with Alzheimer's Disease and dementia via conference call. R.E.A.L. urges NAPA to make such flexibility to accommodate these voices that need to be heard.

Specifically, R.E.A.L. calls for NAPA to permit M. Ellenbogen, a long time activist for those with Alzheimer's Disease to speak, as his own Alzheimer's Disease and physical limitations make such in-person travel to the Dementia Care Summit impossible.

Please give him this opportunity.


AUGUST 2017 COMMENTS

J. Koehler  |  08-24-2017

I am looking for NAPA council meeting dates, could you please send me the link to future meetings?

ANSWER

Information on future meetings is available at https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services#NextMtg.


A. Harvey  |  08-22-2017

I have been doing homehealth for 17 yrs And I love my job!!!! Any info would be highly appreciated!!! please thank u.


JULY 2017 COMMENTS

M. Ellenbogen  |  07-28-2017

Good to see you at NAPA by video. Can they find another way to say demented? I really hate it when I hear that word and so do most of us with AD. It's okay if one doctor talks to another but not in public. Thanks


S. Blumrosen  |  07-27-2017

My father had a stroke in 2011, experienced a sharp decline in 2013, and passed away July 23, 2015. His death certificate lists Alzheimer's Disease (AD) as a cause of death, although there was no brain autopsy to make that determination.

I am not an officer or director of any organization focused on matters concerning AD. While taking care of my father, I did found a company to promote a product I, and other caregivers, found useful. The website is still available at http://www.247caregivingproducts.com.

My father, A.W. Blumrosen, the Thomas A. Cowan Distinguished Professor of Law, taught at Rutgers School of Law -- Newark for 46 years, 1955-2002.

He met and married my mother, R.G. Blumrosen, when they were students at the University of Michigan School of Law. She was one of five women students in their class, one of ten women students in the law school.

They graduated in 1953 and practiced law in the same office where S. Blumrosen, my father's father, had practiced. He graduated from the University of Michigan Law School in 1913.

Following is a brief chronology to inform you about his life and work. Since my father and mother worked on many projects together, I will use their first names (Al and/or Ruth) for clarity:

1960 (approx.), Al was granted tenure and became a full professor.

1961, Al was a visiting professor at LSU, in Baton Rouge, Louisiana.

1963 (approx.), at the request of S. Reitman, a Newark attorney appointed to the NJ Civil Rights Commission, Al's class studied and made recommendations concerning that agency.

1965, June (approx.), Al and Ruth were each early hires at the Equal Employment Opportunity Commission (EEOC). Eventually, Al became the EEOC's first Director of Federal State Relations and first Chief of Conciliations, for purposes of conciliating cases in which the Commission found reasonable cause to believe several employers in Alabama had violated Title VII, he was based in the Federal Building in Birmingham; Ruth was Acting Chief for Advice and Analysis and Acting Director of Compliance at the EEOC, and became Lecturer of Law and Assistant to the Dean of Howard University School of Law, C. Ferguson.

1968, Al was Special Attorney in the Civil Rights Division of the U.S. Department of Justice.

1969-71, Al was a Consultant to Assistant Secretary of Labor for Employment Standards, A. Fletcher, where he advised on regulations and procedures including OFCCP-Order No. 4 and a national program concerning the construction trades, the Philadelphia Plan.

1970, Al and Ruth were each a participant in the first International Labor Organization (ILO) conference behind the Iron Curtain, the 5th International Conference of Labor Law and Social Security. By that time, the ILO was part of the United Nations.

1970, Al published "Administrative Creativity: The First Year of the Equal Employment Opportunity Commission" in the George Washington Law Review.

1971, Al published Black Employment and the Law (Rutgers University Press).

1972-73, Al was Acting Director of the Michigan Department of Civil Rights.

1972, Al published "Strangers in Paradise: Griggs v. Duke Power Co. and the Concept of Employment Discrimination" in the Michigan Law Review. This article was cited in a U.S. Supreme Court decision handed down June 25, 2015, Texas Department of Housing and Community Affairs, et al. v. Inclusive Communities Project, Inc., et al (https://www.supremecourt.gov/opinions/14pdf/13-1371_m64o.pdf).

1977-79, Al was Consultant to EEOC Chair E.H. Norton in connection with EEOC Reorganization, Uniform Guidelines on Employee Selection Procedures, Affirmative Action Guidelines, and procedures for processing individual and systemic cases. He resigned so Ruth could be Consultant to EEOC Chair E.H. Norton on issues raised by workforce reductions and gender-based income inequality.

At that time, Al and Ruth started thinking about why R.H. Lee and T. Jefferson would want to revolt against Great Britain and began research on a book that was published 25 years later, Slave Nation: How Slavery United the Colonies and Sparked the American Revolution (Sourcebooks, 2005). The first chapter is about J. Somerset and the Somerset Case.

1979-1982, Al was Of Counsel to the New York law firm, Kaye, Scholer, Fierman, Hays & Handler advising employers on equal opportunity matters; 1980-81, Ruth was Consultant on Equal Employment Opportunity, here at the Department of Health and Human Services.

1982, Al and Ruth were Counsel to mainly white female employees challenging a discriminatory layoff in Chrapliwy v. Uniroyal, 670 F.2d 760 (7th Cir. 1982) cert. denied, 103 S. Ct.2428 (1983).

1983, Al wrote "Six Conditions for Meaningful Self-Regulation" which won the Ross Essay Prize awarded by the American Bar Association. Later, Al learned that the judge of the competition was Judge Higginbotham.

1985, Al was Counsel to the NAACP in NAACP v. Meese, 615 F. Supp. 200 (D.D.C) seeking an injunction against rescission of consent decrees involving affirmative action.

1986, Al published "Some Thoughts on Affirmative Action Here and in India: Galanter's Competing Equalities," Industrial Relations Law Journal, U.C. Berkeley Law School.

1989, Al was Counsel to the NAACP in Wards Cove Packing Co. v. Atonio, 109 S.Ct. 2115 (D.D.C) concerning the interpretation of Title VII of the Civil Rights Act.

1989, Al and Ruth were Counsel to the mainly white male employees seeking equal pay in Klask v. Northwest Airlines, 57 FEP Cases 1147, 1152 (D. Minn. 1989, 91).

1993, Al and Ruth were each Fulbright Scholars at Stellenbosch University in South Africa where they examined the usefulness of the U.S. experience with equal employment opportunity law in the post-apartheid period and, with L. Human, published "An Affirmative Action Statute for Employment and Contracting: Some Proposals" in the South Africa industrial Law Journal (1994).

1995, Al was Advisor to the U.S. Department of Labor, which resulted in "How the Courts are Handling Reverse Discrimination Claims," Bureau of National Affairs, Daily Labor Report, March 23.

1995, Al and Ruth were each Resident Scholars at the Rockefeller Institute Conference and Study Center in Bellagio, Italy.

1998: Al and Ruth published "Downsizing and Employee Rights," 50 Rutgers Law Review 943.

1998-2004: Al and Ruth, with the benefit of a Ford Foundation grant administered by Rutgers, published "The Realities of Intentional Job Discrimination in Metropolitan America, 1999." 40 state reports and a national report compare, with statistical precision, the standard deviations of the workforce of each employer-establishment, by occupation, with the workforces of similar establishments in the same Metropolitan Statistical Area and industry, by occupation. Statisticians D. and S. Dale worked on the reports. Available at http://www.eeo1.com. My brother, Alex, and I worked with Al and Ruth on this project.

2004, Ruth died suddenly and unexpectedly in an auto accident.

2005, Slave Nation: How Slavery United the Colonies and Sparked the American Revolution was published by Sourcebooks. Alex and I worked with Al and Ruth on this project.

2005, Al and Alex published "Using Statistics to Measure Diversity Compliance by Establishing Deviations from Labor Market Practices -- A Model for Effective and Economic Regulation in the Global Computer Age."

2011, Al and I published "Restoring the Congressional Duty to Declare War," Rutgers Law Review.

2011, Al had a stroke which left him with "expressive aphasia," which meant that, as intellectual and articulate as he used to be, with great dedication to speech, physical and occupational therapy, he was unable to find all the words he wanted, when he wanted to use them. He could take in information through his senses and process that new information with his mind, but he could no longer express himself as fluently as before.

Even so, we began work on our next project, a book about E. Coles. We wrote about Coles in one of the last chapters of Slave Nation, because it is noted by many historians that he challenged then former-President Jefferson to free their slaves together. Jefferson refused. Coles proceeded with his plan of emancipation and may have been the first plantation owner to free his slaves while he could have profited from them. We were into the fourth volume of R. Caro's biography of LBJ when my father was no longer able to concentrate enough on the material to communicate, in any way, about it.

That project was shelved and I focused on being my father's 24/7 caregiver. I got to be so good at taking vitals, giving meds, and keeping my patient safe, germ and rash-free that the home health care professionals suggested I challenge the CNA exam.

Since my father passed away, I have been administering his estate and developing a plan to outline our book about E. Coles. Recently, I found your website (https://aspe.hhs.gov/national-alzheimers-project-act) and found out about your quarterly meetings.

I am grateful that our nation is taking a comprehensive interest in all of the elements concerning issues related to Alzheimer's Disease and I am especially appreciative of your concern for the needs of caregivers, whether professional or family-volunteer.

Thank you for letting me "pay it forward" by sharing the following top-of-mind comments. Perhaps they will be useful to you and others who are working to efficiently marshal and focus our limited resources on matters concerning AD.

My father chose to "age-in-place" and asked me to take care of him at home in Bonita Springs, Lee County, Florida, as long as I was able. I agreed.

Home Health Care

The greatest help to me, and to my father, were the home health-care workers -- nurses, CNAs and therapists (speech, occupational, and physical).

Under Medicare, they were available only after a hospital stay of at least three days, and only as long as there was opportunity for improvement. I hope this national effort will spend some time and expend some resources:

  1. Figuring out ways to provide the connection and services of home health care -- without the pre-requisite of a hospital stay and, in appropriate situations, without the requirement that there be room for improvement, perhaps with the removal of speech, physical and occupational therapy and the retention of nursing and CNA services, and
  2. Improving and standardizing the best practices of professionals providing home health care. In our experience, some excelled -- both at the technical aspects of their job and also in approaching people with Alzheimer's Disease -- and some did not do their jobs well. Medicare pays the same to the home health care agencies (I think) but it matters who comes to the house. Therapists, CNAs and nurses are not, yet, fungible in the basic performance of their duties.

Brain Autopsies

During my father's last days, many people spoke with us -- hospice, doctors, etc. No one said anything about brain autopsies.

I would like to suggest that someone specific in the health care setting be tasked with informing the health care proxy about the availability of brain autopsies.

I have since learned that Medicare considers the payment for brain autopsies to be included in the cost of a hospital stay, and some hospitals disagree. I hope this has been, or will be, clarified.

I know, for my own peace of mind, I would have liked a definitive diagnosis of AD, which -- at that time -- could only be done with a brain autopsy that revealed whether there were plaques and tangles, or there was something else that mimicked the symptoms of AD.

Based on conversations with Dr. F. Schaerf in Ft. Myers, principal investigator and founder of the Neuropsychiatric Research Center of Southwest Florida, I assume that it would be helpful to the medical community to have many more brain autopsies that could provide more data-points about the plaque and tangles, amyloid and tau proteins, in the brain.

I would suggest some consideration of ways to ease the flow of information to health care proxies about brain autopsies, as well as clarification to hospitals that they are expected to perform brain autopsies at no additional cost to the family, the caregiver or the taxpayers.

Perhaps hospitals could be required to submit a small portion of their per diem to a national trust which would save and combine such deposits for the designated purpose of performing brain autopsies. This way, the full cost of a brain autopsy would not have to be borne by the last hospital where a decedent happened to be an in-patient. The cost would be spread over every hospital that charged Medicare for treating a patient with AD.

Research

Shortly before my father passed away, I learned there is research being done on the use of sonogram technology to "cure" Alzheimers. See, for example, http://www.sciencealert.com/new-alzheimer-s-treatment-fully-restores-memory-function.

As you know, sonograms and ultra-sound have been approved for other uses in the United States, for many years and, I have been told, that the technology could be used for this purpose if a doctor was courageous enough. Perhaps such courage could be strengthened with laws protecting doctors from liability for the creative use of current technology (1) with patients who are certified to be in the last stages of life and (2) with the health proxy's consent.

My father could not be more dead than he is now, if a doctor had tried a new use of an approved technology on him. And, he would have made one last contribution to society. I am proud of him for the work he did while active, for his courage in fighting to re-learn skills we took for granted like talking, and for his fight for life. He was reaching for his last gasp of air in the hands of an ambulance attendant and did not go gently into the night. It would have extended my reasons to be proud if we could have furthered Alzheimer's research by trying non-invasive non-pharmaceutical ways to deal with his challenges and our situation.

Alternatives or Supplements to Pharmaceuticals

One time my father was in a small well-respected rehabilitation facility after a hospitalization in Naples, Florida. Rehab, there, is short-term and intense. It requires a certain amount of concentration during the day. My father would get anxious at night and receive medication to calm him. But, that resulted in his being sleepy the next day, which interfered with his therapies.

I suggested that the facility try what they talk about in their beautiful four-color brochure and take an alternative holistic approach by using aromatherapy. When I arrived for visiting hours that evening, they had sprayed his pillow with lavender. He slept well that night, needed less attention from the nursing staff, and was more awake the next day.

I wonder whether non-pharmaceutical solutions (which, I imagine are typically lower cost) are receiving attention equal to pharmaceutical solutions.

AD Mimics

After the experience with my advocacy for my father, one of the head nurses talked with me. There was an article in the April 2014 AARP Bulletin by M.D. Rosen, "Am I Losing My Mind: Conditions that Mimic Dementia," that says over 100 disorders can mimic AD. The article highlights:

  • Normal pressure encephalitis (NPE),
  • Medications,
  • Depression or another mental health disorder,
  • Urinary tract infection (UTI), and
  • Thyroid.

The nurse explained that there can be difficulties in determining exactly what is producing the symptoms of Alzheimer's.

Perhaps there could be further study and the development of programming, best practices and information for the public, including untrained and unlicensed family caregivers, about ways to filter out symptoms that mimic AD.

I showed the article to my father's neurologist, a dedicated doctor. He set up an appointment with someone who gives tests. I, as someone who was not going to be the subject of the test and was the subject's health proxy, inquired about the nature of the test. The tester was opaque; she would tell me nothing more than the doctor would be able to make a definitive diagnosis of AD, which every article I read said was impossible without a brain autopsy.

I suggest that "experts" be trained and required to explain what they are about to do, in plain language that the health care proxy can understand, so the health care proxy can make an informed decision.

Alzheimer's Village

The nurse at the rehab center also told me she had heard on Facebook about an "Alzheimer's Village." I found there is one. It is called Hogewey, a small village in Weesp, the Netherlands, where every resident has severe dementia (https://www.youtube.com/watch?v=LwiOBlyWpko). Hogewey is specially built, with the intention of maintaining strong connections with the interests and thought patterns of people who show symptoms of AD, while providing a safe and supportive place to live.

It is called a village because it has different areas for different interests. Recognizing that people develop circles of friends with similar interests, Hogewey connects someone with a strong interest in sports, for example, with other people who are interested in sports.

In our experience, living in a place that was familiar to my father and focusing on the work of writing about E. Coles probably kept my father engaged much longer than if he were in an institution with few touchstones to his personal experience and memories, and little intellectual stimulation.

I saw support for this when my father was in another well-respected rehab facility. They sat people with similar interests or backgrounds at the same table for dinner. Our dinner companions were more engaged in conversation and aware of their circumstances than those in facilities where I would have dinner with my father and the dining room staff was not purposeful and intentional about putting people together who had things to talk about.

The rehab nurse thought there could be room on or near the NCH campus for such a village. Perhaps, nationally, there could be incentives for the study and development of such people-oriented living situations that adjust to activities a patient prefers in their daily life rather than expecting a patient to fit into an institution's routine and "blaming" the patient for not carrying on a pre-determined set of activities in their daily life.

Finally, modern technology and last stages of life.

To return to my anecdote about the use of sonogram technology, according to news releases the principal investigators are at the University of Queensland in Brisbane, Australia. They work with several labs in other places of the world. I tried to email with them, but there was not enough time.

Apparently, the work of the researchers continues, using focused ultra-sound in combination with "microbubbles" to temporarily open the blood brain barrier and enhance delivery of anti-amyloidal antibodies directly to the brain (See, http://www.sciencealert.com/ultrasound-with-immunotherapy-could-be-used-to treat-alzheimer-s and http://www.fusfoundation.org).

This year, this technique has been used on humans. Research is progressing quickly. (http://www.medpagetoday.com/neurology/alzheimersdisease/64114).

It would be nice if there were:

  1. A central place where untrained family caregivers could find verified information about the progress of research that is not tied to gatekeepers for the research studies. Perhaps the NIH website could be a source of information that has no interest in any particular path of research.
  2. Consideration of conducting experimental research on people with less to lose, who are certifiably near the end of their lives. Families would more fully appreciate the miracle. And, if it doesn't work, the researchers will not unduly hasten the demise of the patient.

M. Hogan  |  07-23-2017

Thank you for the opportunity to once again address the Council.

For the past 6 years I have attempted to have a presence at and bring a voice to this forum as a representative of individuals with intellectual disabilities and dementia and their families. I have been driven to do so because of my late brother Bill who had DS, developed AD in his mid 40's and died in 2010 of aspiration pneumonia at age 49. Since his death I have remained determined to improve the quality of life for the ID population with AD and for their caregivers.

For 6 years I have been witness to topic specific NAPA Council agendas and detailed testimony from various arenas about the work that has been done to improve quality of life for those in the general population with ADRD and for their caregivers. I continue to request a quarterly session dedicated to the needs of the ID population who were originally included in Section 2H, populations disproportionately affected by AD. Such a session would be most advantageous as you look forward to a transition period and the arrival of a newly selected Advisory Council Leadership and Team who may bring to the table little or no background information about this special population.

In the course of the last seven years I believe that there has been increased awareness of issues related to those with ID and Dementia, especially those with DS and AD. More recently additional research dollars have been earmarked for research on the correlation of these two diseases with a focus on biomarkers that might help the general population as well.

There has been additional material made available for families on aging, ID/DS and dementia, generated by the NTG and NDSS along with the inclusion of info on the Alzheimer's Association website. A companion publication on DS and AD will soon be released by the NDSS. This work has been the result of a collaboration involving the NDSS, the Alzheimer's Association and the NTG. It is a long awaited and much needed resource. The ACL has identified and funded pilot programs in selected communities across the US. These have been designed to increase the knowledge base of agencies, care providers and family members.

Despite these efforts, individuals with ID experiencing further cognitive decline and their families and care providers face continued serious obstacles. These obstacles are voiced from all regions of the country in a monthly online support group for family members hosted by the NTG. These are the same obstacles repeatedly mentioned in public testimony at NAPA Council meetings over the course of the past 6 years.

They include:

  • Limited awareness of or misunderstood risk factors for AD in the ID population
  • Difficulty obtaining a differential diagnosis or accessing Physicians familiar with the ID population
  • Limited access to Agencies with Skilled Direct Support Professionals familiar with ID and ADRD
  • Trouble identifying and accessing resources in ID and Aging networks
  • Underdeveloped resources that focus on quality of life for a person with ID and ADRD
  • Lifelong caregivers who are aging and facing physical decline as family member needs increase
  • Sibling/Compound caregivers, caring for parent, spouse or other family member simultaneously
  • Decreased support networks as disability increases, especially in small communities and rural areas
  • Limited residential alternatives when caregiving resources are depleted
  • Lack of coordination of care
  • Limited access to palliative and hospice care

As you look ahead to the Research Summit in October of 2017, I am hopeful that you will consider many of the afore-mentioned challenges faced by families.

However, as a lay person, my greatest fear is that there will be added lag time as areas of research are identified, studies conducted and the findings translated into actions that may possibly improve the quality of life for all people with ADRD and their caregivers.

Change cannot come soon enough for individuals with ID and ADRD and their families scattered around the US in both rural and urban settings. Each month when we meet on line or share an email, I hear in their many voices the same sense of desperation that I experienced more the 10 years ago. Their voiced desperation reinforces the fact that we have not come far enough, fast enough and need to be more action oriented in the immediate future. This is a population of individuals and most often lifetime caregivers that cannot be forgotten.

Thank you for the opportunity to address the Council today.


S. Fournier  |  07-22-2017

Seven Hills RI and the Project Partners involved with our project funded through would like to express appreciation to the Administration for Community Living or for the funding opportunity that Seven Hills RI received to address efforts to create a more dementia capable system of care for individuals with intellectual and developmental disabilities and dementia. We would also like to express our appreciation for the support of E. Long and S. Shuman, and to make available the newly published document Intellectual Disability and Dementia: A Caregiver's Resource Guide for Rhode Islanders.

Seven Hills also extends thanks to the collaborative partners of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG), Alzheimer's Association of Rhode Island (AARI), Lt. Governor McKee and his staff, the RI Geriatric Education Center (RIGEC) at the University of RI (URI), and the families and agency personnel who served as focus group members and who provided their comments prior to the Resource Guide's publication. Without the help of each of these groups, this guide, and its dissemination, would not have been possible.

Our hope is that this Resource Guide will provide the foundation that caregivers need to begin the conversation in planning supports for the individuals you support. Additionally, we hope this Resource Guide will serve as a reference tool for other states to develop their state specific Guides and include them in their state plans that address Alzheimer's Disease and related dementias.

ATTACHMENT:

Intellectual Disability and Dementia: A Caregiver's Resource Guide for Rhode Islanders [Available as a separate link: https://aspe.hhs.gov/sites/default/files/private/pdf/257486/cmtach-SF1.pdf]


J. Dorey  |  07-21-2017

I am submitting herewith as a public comment to be read at the next meeting of the "Advisory Council on Alzheimer's Research, Care and Services" a manuscript entitled "Alzheimer's Hypothesis" as copied below and also attached hereto in pdf format.

The manuscript outlines a pathological hypothesis which offers a complete explanation for the development of Alzheimer's disease, compressed into a one page submission that can be read at the meeting within the allotted two minute limit for such public comments.

I have also attached two other items as supporting documentation which will allow you to better evaluate the validity of the hypothesis. in accordance with your procedure for public submissions this supporting documentation is not intended to be considered as a submission to the meeting.

I do not propose to attend the meeting, please confirm my understanding that the submission can be read to the meeting in my absence.

I am a retired professional engineer and have no organizational affiliation. On reading the submission you will realize that the pathology for Alzheimer's disease bears a resemblance to an engineered system and my hypothesis was developed on the basis of a system engineering study that correlated apparently unrelated findings in numerous published manuscripts.

ATTACHMENT #1:

Alzheimer's Hypothesis

This presentation offers a complete explanation for the development of Alzheimer's disease and identifies a possible way to reduce the incidence of Alzheimer's disease in future.

In a catechol-o-methyl transferase reaction norepinephrine released in the cortex of the brain breaks down elastic polymers in the walls of the arteries resulting in a gradual build-up of atherosclerosis in those arteries. The extent of atherosclerosis that has built up over many years significantly restricts the flow of blood through the arteries causing Alzheimer's brains shrink from a lack of nourishment in support of neuron activity and the beta amyloid deposits that form in Alzheimer's brains are the misfolded protein remnants of broken down polymers from the walls of the damaged arteries. Mental, physical and chemical types of stress all tend to promote the release of norepinephrine thus accelerating the build up of atherosclerosis for an increased risk of developing Alzheimer's disease during a person's lifetime.

Cerebrospinal fluid (CSF) is pumped through aquaporins wound in a covering spiral over the arteries in the brain and the pulsating elastic expansion and contraction of healthy arteries pressing against the covering of aquaporinins provides the pumping mechanism for the flow of CSF through the aquaporins and its circulation throughout the individual areas of the brain served by each artery. As atherosclerosis builds up in the arteries their walls harden and cause the pumping action for circulation of CSF to become reduced due to a loss of pulsating arterial expansion and contraction. The build-up of beta amyloid deposits in the brain also tends to obstruct the circulation of CSF; therefore, the circulation of CSF becomes compromised both by the build-up of beta amyloid deposits and by a steadily decreasing pumped volume of CSF through the aquaporins.

At the start of each activity cycle, neurons in the brain emit a K+ ion and thus acquire an internal negative electrical charge. During recovery from activation a neuron which still retains its negative internal electrical charge before achieving electrical equilibrium will undergo a seizure and be destroyed if it happens to capture a nearby K+ ion which has not been washed far enough away by the circulation of CSF. The circulation of CSF in healthy brains establishes a virtually negligible probability for the capture of K+ ions but the statistical probability for capture of K+ ions during recovery from activation increases exponentially in areas of the brain where the circulation of CSF becomes compromised. A compromised inadequate circulation of cerebrospinal fluid and the resulting destruction of neurons is the direct cause of Alzheimer's disease. The tau tangles that form in Alzheimer's brains are the remnants of destroyed neurons.

Brain plasticity is so effective in programming repairs which bypass destroyed neurons that the first symptoms of cognitive impairment only become apparent after too much extensive vascular damage and resulting neuron destruction has already taken place, making it impossible to effect a cure for the disease. However, the incidence of Alzheimer's disease could be greatly reduced in future by the development of a daily prophylactic therapy which would restrict the release of norepinephrine in the brain and slow down the build up of atherosclerosis in the intracranial arteries. Ideally, such a therapy should be commenced at an early age, typically before age 30. A small daily dosage of alpha blocker medication with supplements of vitamins D, B6, B12 and folic acid might possibly serve as such a prophylactic therapy. (Adding a beta blocker could possibly extend scope of the therapy to also reduce the incidence of type 2 diabetes and vascular disease.)

The level of plasma total homocysteine in the blood and of normetanephrine in the urine are biomarkers for the release of norepinephrine and also for a resulting increased risk of developing Alzheimer's disease in future. The development of a reasonably priced capability for monitoring such a biomarker would allow people to assess the effectiveness of the prophylactic therapy and to adjust their diet, lifestyle and medication etc to minimize the risk of developing Alzheimer's disease in future.

There are medications which promote the release of norepinephrine that should be identified and either shown on the label to have an associated Alzheimer's risk or removed from the market if their benefit does not justify the risk.

ATTACHMENT #2:

Pumping of CSF Through Aquaporins of the Brain

A study contribution by J.D. Dorey

Results of a study by M. Nedergaard and J. Iliff as outlined in the following two pages describe the glyampic system of aquaporins that delivers cerebrospinal fluid (CSF) which circulates throughout the brain. The additional information provided below describes the pumping mechanism which promotes the flow of CSF through the aquaporins and how that pumping mechanism and the circulation of CSF becomes inhibited in areas of the brain where atherosclerosis develops in the walls of the intracranial arteries.

The CSF circulating to the brain is delivered through aquaporin pipes which form a sheath over the outer surface of the intracranial arteries that distribute blood within the brain. In healthy brains the arteries have elastic walls and are continuously undergoing cycles of expansion and contraction as spurts of blood pass through them under pressure from the pulsating pumping action of the heart and when the arteries expand they compress against the surrounding aquaporin pipes forcing spurts of the contained CSF to flow through the aquaporin pipes ahead of the advancing spurts of blood in the arteries, much like the process of squeezing toothpaste out of a tube. This mechanism is what circulates CSF throughout the brain.

Atherosclerosis is a condition where the walls of the intracranial arteries gradually harden and lose their elasticity and ability to expand and contract as necessary to circulate CSF through the brain. One purpose of CFS circulation is to cleanse waste matter from the brain however the absolutely vital purpose is that a good flow of CFS is required to maintain the statistical probability for excitotoxic destruction of neurons as a negligibly rare occurrence that the brain's plasticity can work around.

The study referenced below in bold type indicates that the statistical probability of excitotoxic neuron destruction increases enormously in areas of the brain where the circulation of CSF is significantly reduced. This would explain why atherosclerosis from damage to arteries by dopamine produced in the substantia nigra area of the brain results in Parkinson's disease and from damage to arteries by norepinephrine produced in the cortex of the brain results in Alzheimer's disease or dementia.

Delayed K+clearance associated with aquaporin-4 mislocation:
Phenotypic defects in brains of á-syntrophin-null mice.
Nov 11, 2003 - by Mahmood Amiry-Moghaddam, Professor of Medicine, University of Oslo
Proceedings of the National Academy of Sciences Vol. 100 No. 23

(The text of this study can be viewed on the Internet.)

Two possible secondary consequences of atherosclerosis in the intracranial arteries are:

The flow of blood through healthy arteries is facilitated by their elastic expansion and contraction and when the walls of the intracranial arteries lose their elasticity the flow of blood to provide oxygen and glucose in support of neuron activity becomes significantly reduced.

A healthy human brain continually produces about 20 Watts of heat within the close confines of the skull and the circulation of blood and CSF throughout the brain provides liquid cooling that removes heat from inside the skull and ensures that all parts of the brain are maintained at about the same ideal operating temperature. When the circulation of blood and CSF is curtailed there is a possibility of impaired operation if part of the brain is not maintained at its optimum operating temperature.

ATTACHMENT #3:

Scientists Discover Previously Unknown Cleansing System in Brain -- The Glymphatic System

Wednesday, August 15, 2012

A previously unrecognized system that drains waste from the brain at a rapid clip has been discovered by neuroscientists at the University of Rochester Medical Center. The findings were published online August 15 in Science Translational Medicine [http://stm.sciencemag.org/lookup/doi/10.1126/scitranslmed.3003748].

The highly organized system acts like a series of pipes that piggyback on the brain's blood vessels, sort of a shadow plumbing system that seems to serve much the same function in the brain as the lymph system does in the rest of the body -- to drain away waste products.

"Waste clearance is of central importance to every organ, and there have been long-standing questions about how the brain gets rid of its waste," said M. Nedergaard, M.D., D.M.Sc. [http://www.urmc.rochester.edu/people/23788299-maiken-nedergaard], senior author of the paper and codirector of the University's Center for Translational Neuromedicine [http://www.urmc.rochester.edu/ctn/]. "This work shows that the brain is cleansing itself in a more organized way and on a much larger scale than has been realized previously.

"We're hopeful that these findings have implications for many conditions that involve the brain, such as traumatic brain injury, Alzheimer's disease, stroke, and Parkinson's disease," she added.

Nedergaard's team has dubbed the new system "the glymphatic system," since it acts much like the lymphatic system but is managed by brain cells known as glial cells. The team made the findings in mice, whose brains are remarkably similar to the human brain.

Scientists have known that cerebrospinal fluid or CSF plays an important role cleansing brain tissue, carrying away waste products and carrying nutrients to brain tissue through a process known as diffusion. The newly discovered system circulates CSF to every corner of the brain much more efficiently, through what scientists call bulk flow or convection.

"It's as if the brain has two garbage haulers -- a slow one that we've known about, and a fast one that we've just met," said Nedergaard. "Given the high rate of metabolism in the brain, and its exquisite sensitivity, it's not surprising that its mechanisms to rid itself of waste are more specialized and extensive than previously realized."

While the previously discovered system works more like a trickle, percolating CSF through brain tissue, the new system is under pressure, pushing large volumes of CSF through the brain each day to carry waste away more forcefully.

The glymphatic system is like a layer of piping that surrounds the brain's existing blood vessels. The team found that glial cells called astrocytes use projections known as "end feet" to form a network of conduits around the outsides of arteries and veins inside the brain -- similar to the way a canopy of tree branches along a well-wooded street might create a sort of channel above the roadway. Those end feet are filled with structures known as water channels or aquaporins, which move CSF through the brain. The team found that CSF is pumped into the brain along the channels that surround arteries, then washes through brain tissue before collecting in channels around veins and draining from the brain.

How has this system eluded the notice of scientists up to now?

The scientists say the system operates only when it's intact and operating in the living brain, making it very difficult to study for earlier scientists who could not directly visualize CSF flow in a live animal, and often had to study sections of brain tissue that had already died. To study the living, whole brain, the team used a technology known as two-photon microscopy, which allows scientists to look at the flow of blood, CSF and other substances in the brain of a living animal.

While a few scientists two or three decades ago hypothesized that CSF flow in the brain is more extensive than has been realized, they were unable to prove it because the technology to look at the system in a living animal did not exist at that time. "It's a hydraulic system," said Nedergaard. "Once you open it, you break the connections, and it cannot be studied. We are lucky enough to have technology now that allows us to study the system intact, to see it in operation."

First author J. Iliff, Ph.D. [http://www.linkedin.com/pub/jeffrey-iliff/47/856/a52], a research assistant professor in the Nedergaard lab, took an in-depth look at amyloid beta, the protein that accumulates in the brain of patients with Alzheimer's disease. He found that more than half the amyloid removed from the brain of a mouse under normal conditions is removed via the glymphatic system.

"Understanding how the brain copes with waste is critical. In every organ, waste clearance is as basic an issue as how nutrients are delivered. In the brain, it's an especially interesting subject, because in essentially all neurodegenerative diseases, including Alzheimer's disease, protein waste accumulates and eventually suffocates and kills the neuronal network of the brain," said Iliff.

"If the glymphatic system fails to cleanse the brain as it is meant to, either as a consequence of normal aging, or in response to brain injury, waste may begin to accumulate in the brain. This may be what is happening with amyloid deposits in Alzheimer's disease," said Iliff. "Perhaps increasing the activity of the glymphatic system might help prevent amyloid deposition from building up or could offer a new way to clean out buildups of the material in established Alzheimer's disease," he added.

In addition to Iliff and Nedergaard, other authors from Rochester include M. Wang, Y. Liao, B. Plogg, W. Peng, E. Vates, R. Deane, and S. Goldman. Also contributing were E. Nagelhus and G. Gundersen of the University of Oslo, and H. Benveniste of the Health Science Center at Stony Brook University.

The work was funded by the National Institutes of Health (grant numbers R01NS078304 and R01NS078167), the U.S. Department of Defense, and the Harold and Leila Y. Mathers Charitable Foundation.

ATTACHMENT #4:

How to optimise your brain's waste disposal system

Aug 22, 2015

New research suggests that body posture during sleep may affect the efficiency of the brain's self-cleaning process

The human brain can be compared to something like a big, bustling city. It has workers, the neurons and glial cells which co-operate with each other to process information; it has offices, the clusters of cells that work together to achieve specific tasks; it has highways, the fibre bundles that transfer information across long distances; and it has centralised hubs, the densely interconnected nodes that integrate information from its distributed networks. Like any big city, the brain also produces large amounts of waste products, which have to be cleared away so that they do not clog up its delicate moving parts. Until very recently, though, we knew very little about how this happens. The brain's waste disposal system has now been identified. We now know that it operates while we sleep at night, just like the waste collectors in most big cities, and the latest research suggests that certain sleeping positions might make it more efficient.

Waste from the rest of the body is cleared away by the lymphatic system [http://www.cancerresearchuk.org/about-cancer/what-is-cancer/body-systems-and-cancer/the-lymphatic-system-and-cancer], which makes and transports a fluid called lymph. The lymphatic system is an important component of the immune system. Lymph contains white blood cells that can kill microbes and mop up their remains and other cellular debris. It is carried in branching vessels to every organ and body part, and passes through them, via the spaces between their cells, picking up waste materials. It is then drained, filtered, and recirculated.

The brain was thought to lack lymphatic vessels altogether, and so its waste disposal system proved to be far more elusive. Several years ago, however, M. Nedergaard [https://www.urmc.rochester.edu/labs/nedergaard-lab/] of the University of Rochester Medical Center and colleagues identified a system of hydraulic "pipes" [https://www.newscientist.com/article/dn22183-waste-disposal-network-discovered-in-the-brain/] running alongside blood vessels in the mouse brain. Using in vivo two-photon imaging to trace the movements of fluorescent markers, they showed that these vessels carry cerebrospinal fluid around the brain, and that the fluid enters inter-cellular spaces in the brain tissue, picking up waste [http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3551275/] on its way.

Nedergaard and her colleagues also discovered that proper function of these vessels depends on movements of water around the brain, which are carried out by glial cells called astrocytes, [https://www.theguardian.com/science/neurophilosophy/2013/mar/07/human-brain-cells-boost-mouse-memory] and therefore named them the glymphatic system. They went on to show that inter-cellular spaces expand by up to 60% in the brains of naturally sleeping and anaesthetised mice, and that this expansion drives the clearance of waste from the brain [http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3880190/] by facilitating the movements of lymph and water.

Last month, researchers from the University of Virginia reported the identification of lymphatic vessels in the central nervous system [https://www.nature.com/articles/nature14432.epdf?referrer_access_token= 73VNMajh-YctNTGco_XUj9RgN0jAjWel9jnR3ZoTv0PP9svrp_06Oir1YyDWe7ejvVLL2VbrH_EwNtYJfrQFs0e9-52wHfwKPwFmFnLP6V31OlM0nnYEmBXU_cERvmChguYSd02A9zDIMThkJLhI_iVl4f1FJO IZ7PnYDwSJ0ANlqQQ0LnUd3e_CFRU0mcDKYsPUDBoHrQFYKAyuXzHBsJfzRxH0ZsJuk50cmJ-Z0S2GOBquBoA09XaF-yZQO-PmnSWBFlT7TBPGHTyzhkDq_w==&tracking_referrer=www.theguardian.com]. They demonstrated that the lymphatic system extends into the dura mater, the thickest and outer-most of the three meningeal membranes that envelope the brain and spinal cord. These vessels run parallel to the major veins and arteries, and split to send branches deep into the brain's crevices. The researchers believe that they could be linked to the glymphatic system, and may be the second stage of the disposal mechanism, which would transport waste out of the brain and spinal cord altogether.

The latest study from Nedergaard's group, published [http://www.jneurosci.org/content/35/31/11034] in the Journal of Neuroscience earlier this month, shows that body posture affects the efficiency of the glymphatic system's waste clearance. Using fluorescence microscopy and radioactive tracing once again, they showed that drainage of the cerebrospinal fluid worked best in mice lying on their sides [http://www.jneurosci.org/content/35/31/11034] compared to those lying on their back or standing up.

The function of sleep was once deeply mysterious, but there's plenty of evidence that it is critical for memory consolidation, [https://www.theguardian.com/science/neurophilosophy/2014/jun/09/sleep-dendritic-spines-memory] and it would now seem to be required for the effective removal of waste from the brain, too. Although these studies were performed in mice, preliminary results suggest that lymphatic vessels are also present in the human brain and spinal cord, but further research will be needed to confirm that they actually constitute a working waste disposal system.

Eventually, the link to sleep could have important implications for the treatment of neurodegenerative diseases such as Alzheimer's and Parkinson's, all of which involve the build-up of misfolded proteins within and around nerve cells, because of a defective waste disposal system. Indeed, it is now seems clear that good sleep hygiene has a neuroprotective effect [https://www.theguardian.com/science/neurophilosophy/2014/sep/22/the-neuroprotective-lifestyle] and, in line with this, other research shows that sleep disturbances predict the onset of neurodegeneration. [https://www.theguardian.com/science/neurophilosophy/2013/may/22/dreaming-of-animals-and-other-warning-signs-of-neurodegeneration]

Sleeping on the side just happens to be the most popular sleeping posture for both mice and humans, and so this preference may have evolved to optimise the waste disposal system and thus ensure that the metropolis of the brain runs as effectively as possible.

References

Lee, H. et al. (2015). The Effect of Body Posture on Brain Glymphatic Transport. J. Neurosci, 35: 11034-44. DOI: 10.1523/JNEUROSCI.1625-15.2015. [http://www.jneurosci.org/content/35/31/11034]

Louveau, A., et al. (2015). Structural and functional features of central nervous system lymphatic vessels. Nature, 523: 337-41. DOI: 10.1038/nature14432. [https://www.nature.com/nature/journal/v523/n7560/full/nature14432.html]

Xu, L., et al. (2014). Sleep Drives Metabolite Clearance from the Adult Brain. Science, 342: 373-7. DOI: 10.1126/science.1241224. [Full text http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3880190/]

Iliff, J., et al. (2013). A Paravascular Pathway Facilitates CSF Flow Through the Brain Parenchyma and the Clearance of Interstitial Solutes, Including Amyloid ß. Sci. Trans. Med., 4: 147ra111. DOI: 10.1126/scitranslmed.3003748. [Full text http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3551275/]

ATTACHMENT #5:

Delayed K+ clearance associated with aquaporin-4 mislocalization: Phenotypic defects in brains of a-syntrophin-null mice, PNAS, 2003, Vol. 100, No. 23, pg 13615-13620 [Available as a separate link: https://aspe.hhs.gov/sites/default/files/private/pdf/257481/cmtach-JD1.pdf]


I. Kremer  |  07-21-2017

In today's meeting, the Advisory Council is focusing on research gaps and dementia prevention strategies. So it is particularly fitting that NIH will present its FY 2019 Bypass Budget for Alzheimer's Disease and Related Dementias. We remain optimistic that NIH laying out an ambitious research agenda and supporting highly meritorious science will continue to inspire bold funding support from Congress -- as has been the pattern in recent years. Our confidence was bolstered earlier this month when the House Appropriations Committee approved the draft FY 2018 Labor, Health and Human Services, and Education (LHHS) bill, which included a $400 million increase for NIA dementia research. As the Advisory Council knows, there has been significant progress in both NIH's bypass budget and its actual grant allocations to better support both social science and bench science so that we improve quality of life for people facing dementia now while seeking breakthroughs to prevent, modify or cure these diseases and disorders.

In the spirit of identifying research gaps, thank you again to the Advisory Council for your deep engagement in, and strong support for, the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers [https://aspe.hhs.gov/national-research-summit-care-services-and-supports-persons-dementia-and-their-caregivers]. I serve on the summit steering committee and we look forward to delivering findings and recommendations that will inform your next National Plan Update, and help both the public and private sectors improve research, and ultimately deliver tangible, transformative results for tens of millions people across this country.

I also would offer congratulations to all those who made possible the 2018 Alzheimer's Association International Conference. Each year, AAIC is a crown jewel in advancing both science and the understanding of science by the broader public. This year was no exception. We look forward to a time when science liberates us all from the shadows of dementia.

And to the entire Advisory Council, thank you for your leadership toward the 2017 National Plan Update. We look forward to its publication and welcome the opportunity to participate in its implementation.


C. Laxton  |  07-21-2017

I'm a former college professor and have been living with dementia since 2005. I'm sorry not to be here today to deliver these remarks in person, but the date conflicted with another commitment. Since this is the last NAPA Advisory Council meeting before the National Research Summit in October, I appreciate the opportunity to provide comments.

Having conducted, taught, analyzed, and participated research studies for the past 30 years, I value the convening of a Research Summit. As a person living with dementia (PWD), based upon reading the Background Papers and other pre-Summit materials available online, I am, however, alarmed about the context and direction of this Summit whose focus is on the service, support and care needs of people like me and our care partners. The first Background Paper, "Research on Care Needs and Supportive Approaches for Persons with Dementia," starts with, "As the disease progresses, individuals with dementia become more dependent on others for assistance with daily activities. Ultimately, in advanced dementia, people with the disease need assistance with basic tasks, such as eating. Dementia reduces a person's cognitive function and ability to perform routine activities; it also is often associated with challenging behaviors. The psychosocial aspects of dementia often include depression, anxiety, and strain on family relationships."

Framing dementia in this context reduces the humanity of people with dementia to mere bodily functions and emotional difficulties. Stripped away are many vital and fundamental aspects of being human, including the need to be connected to others, feeling productive and having purpose, doing activities that bring satisfaction and joy, and maintaining self-sufficiency. Without understanding that these are vital aspects of living, is there any wonder emotional outcomes include depression, anxiety and strain on family relationships?

A stated goal of the National Research Summit is to identify what is known and what needs to be known about care, services and support for PWDs and CPs. What needs to be known is to expand the boundaries and horizons of the deficit-oriented, capacity-defined, negative attributes mindset. The barriers to well-being that lie outside these parameters, including the origins and effects of pervasive stigma, misperceptions and low expectations for people living with dementia, and mistaking dementia as one, homogenous condition need exploration. There are many types of dementia, so symptoms vary significantly from person to person, as does the progression. Yet we are not recognized as individuals with unique needs different from those of others.

In the 1960's, there was a major breakthrough in psychology with the Rosenthal and Jacobson study. The results of the study, commonly known as the Pgymalion Effect, found that reality can be positively or negatively influenced by the expectations and perspectives of others. Thus, if the focus is on functional deficits and negative attributes of people with dementia, that's what will be found. As an example of such negative perceptions of people with dementia, one of the six Summit sessions is titled, "Challenges in Involving Persons with Dementia as Study Participants." A positive perception would be "What Do Researchers Need to Know about Involving Persons with Dementia as Study Participants?" Such adjustments would go far in alleviating the misunderstandings and social stigma attached to people with dementia.

As a former Board member of the Dementia Alliance International, I have had the opportunity to speak with many PWDs and CPs all over the world, and to speak at the United Nations on the importance of including people with dementia in the conduct of research and policy. We universally need you to enable, rather than further disable, us. That is, we need to be included as equals to learn what is needed to be supported and accommodated.

Like you, I am a complex human being with feelings and emotions, ideas and opinions, social and spiritual needs, and even a sense of humor. These aspects of my life are not irrelevant or secondary to my physical capacity, but are indeed central to who I am. Marcel Proust famously said, "The real voyage of discovery consists not in seeking new landscapes, but in having new eyes." People living with dementia sorely need you to have new eyes and see a wider perspective on what is needed to support, accommodate and enable people living with the many forms of dementia!


M. Janicki  |  07-19-2017

I and Dr. S. Keller are the co-chairs of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG), a group formed in 2010 with a mission to advocate for people with intellectual disability and their families and other caregivers when an adult with intellectual disability is affected by dementia (http://www.aadmd.org/ntg). The NTG is an affiliate of the American Academy of Developmental Medicine and Dentistry and is associated with the Rehabilitation Research and Training Center on Developmental Disabilities and Health at the University of Illinois at Chicago.

NTG Activities on Information Development and Dissemination

What we wish to raise today concerns our efforts to create and disseminate information related to dementia and intellectual disabilities. We recognize, as does the Council, that much of the general public, health care professionals, and even workers in the field of intellectual disability, are relatively uninformed about the nuances of dementia and how it affects adults with intellectual disability, as well as their spouses, friends, and caregivers. In concert with colleagues within the Alzheimer's and other dementias, intellectual disability, and university educational community, the NTG continues to develop materials in various media to inform and disseminate such information.

The basis for this is that many families have experienced in obtaining reliable information on recognizing dementia and how to best provide care and supports, in particular when their relative with intellectual disability is in the late or advanced stage of dementia and needing end-of-life specialized care. Further, we recognize that there are many nuanced issues that at times mirror those affecting adults with dementia in general, but also differ due to factors posed by lifelong intellectual disability. These differences can pose barriers to acceptance into generic services or add to confusion about how to provide specialized services. It is our hope at the NTG, as it is among our international colleagues in the intellectual disability and aging community, that any information produced will provide a basis for increased understanding of how dementia affects people with intellectual disability (as it might among other recognized 'special populations') and constructively influence and affect state and local planning, public policies, and clinical and service practices.

NTG Related Publications

Last February we reported on the International Summit on Intellectual Disability and Dementia that was held in October 2016 in Scotland, which came about from a partnership between the NTG and the University of Stirling. We noted that the participants came from numerous countries within Europe and from the USA and Canada. We also noted that subsequent to that meeting the NTG has spearheaded the development of a series of reports, many of which were pending publication in professional journals. These reports covered select issues and contain recommendations that can help expand knowledge, influence policy, and enhance services affecting adults with dementia and intellectual disability.

Thus, we are pleased to report that since February, a number of these papers have been published. One of the papers, Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to Nomenclature, will appear in the October issue of the American Association on Intellectual and Developmental Disabilities' journal, Intellectual and Developmental Disabilities. Another, Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to End-of-life Care in Advanced Dementia, has been published in the Journal of Applied Research in Intellectual Disability. A third, International Summit Consensus Statement: Intellectual Disability Inclusion in National Dementia Plans, has been published by the American Journal of Alzheimer's Disease and Other Dementias. A fourth, Dying Well with an Intellectual Disability and Dementia, has just been published in the Journal of Dementia Care.

Several other papers are under consideration by various journals. One, Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to Post-Diagnostic Support, is with the journal, Aging & Mental Health, and another, Quality Care for People with Intellectual Disability and Advanced Dementia: Guidance on Service Provision, is with BMJ Supportive & Palliative Care. A paper titled, Consensus Statement of the International Summit on Intellectual Disability and Dementia on Valuing the Perspectives of Persons with Intellectual Disability, is under consideration by the Journal of Intellectual Disabilities, and the paper, a Summative Report of the International Summit on Intellectual Disability and Dementia, is under consideration by The Gerontologist.

Another reports and papers are in various states of preparation. These will address a variety of additional topics, including the needs of family caregivers, quality of life and dementia, and dementia-capable services design for providers. Each of these papers contains a series of recommendations that would address issues raised in the papers. These reports and publications are posted on the NTG website -- http://www.aadmd.org/ntg.

NIH Research Summit on Dementia Care: Building Evidence for Services and Supports

We are pleased to report that the NTG commissioned pre-Summit activity has produced a report titled, "Caregiving and Intellectual Disabilities and Dementia: Report of the Pre-Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities". The members of the workgroup, led by Professor Tamar Heller, the chair of the Department on Human Development and Disability at the University of Illinois at Chicago, have completed their discussions and have provided us with a report with recommendations which will be submitted shortly to the Planning Group for the Summit. Copies will be available on the websites of the NTG (http://www.aadmd.org/ntg), the University, and the Summit.

Caregiver Resource Guide

We are also pleased to report that the NTG has completed the booklet and website media, "Intellectual Disability and Dementia: A Caregiver's Resource Guide for Rhode Islanders." This resource was commissioned by the Foundation for Seven Hills Rhode Island and was designed to provide valuable background information for caregivers, including a listing of relevant Rhode Island resources for helping caregivers. Seven Hills Rhode Island is one of the Administration on Community Living's Alzheimer's Disease Initiative grantees and its project work in currently in its second year. The Guide will be on the agency's website and print copies distributed throughout Rhode Island.

Closing

It is our hope that the Council will give due consideration to the substance and recommendations embedded in these various articles and reports, as well as the resource guide, at future meetings and when constructing next year's update of the National Plan to Address Alzheimer's Disease.


JUNE 2017 COMMENTS

N. Satyadev  |  06-27-2017

I would like to please submit the attached video for public comment during the next NAPA Advisory Council Meeting.

(video file) [Available as a separate link: https://drive.google.com/file/d/0BzBVXUmxGCMYd1Jrd0c0VUVWdVE/view]


C. Schelhorn  |  06-26-2017

Do you happen to know when the next NAPA Advisory Council meeting will be held? Is there a schedule for 2017-2018? We're working on our planning calendar and want to be aware of the dates.

ANSWER

Information on future meetings is available at https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services#NextMtg.


H. Fillit  |  06-13-2017

Definitely speaks to the need for new therapeutics for Alzheimer's

==========

From: R. Louie

[Link to comments -- R. Louie]


R. Louie  |  06-13-2017

You may have seen the NEJM review last month by B. Ramsey, a noted cystic fibrosis investigator, and colleagues, about developing therapies when there are relatively few patients. The editors at NEJM were considering my AD related comment for a Letter, but it appears as an online comment.

http://www.nejm.org/doi/full/10.1056/NEJMra1612575#t=comments

Text:

An ironic counter-example: dementia
Ramsey, Nepom and Lonial describe how therapeutic success can be achieved despite daunting and frustrating barriers, even in the "orphan drugs" arena. The authors are modest about their own roles in these projects, and don't detail the leadership necessary to synergize collaborations between disparate, "siloed" organizations. An ironic counter-example, Alzheimer's Disease (AD) / dementia, is said to have five million patients. There is no disease modifying therapy, despite the enormous market, but the field seems to lack the clinical focus and collaboration discussed in the review. The NIH 2018 Bypass Budget for AD research calls for $1.4B, mainly for research that is not directly therapeutic. The Alzheimer's Association is active in research, one of several foundations for the disease. Pharmaceutical companies are heavily involved, but these elements are evidently not enough: over the last five years, only one new agent has been FDA approved, a capsule combining two older agents. Let's hope that AD and other patients awaiting therapy can benefit from the strategies, collaborations and implied leadership reported by these authors.


APRIL 2017 COMMENTS

R. Louie  |  04-270-2017

This is the same theme. I'm not that creative, but this version may be more accessible to a lay audience, I hope. They were able to publish it earlier online than expected.

http://www.baltimoresun.com/news/opinion/oped/bs-ed-alzheimer-progress-20170426-story.html

My original title was "The Emperor's New Clothes: A Ped Oncologist looks for Progress in AD", but the editors took a more direct approach. They also removed a light-hearted reference to the "New Clothes" fairy tale.


B. Hallberg  |  04-19-2017

At the suggestion of Dr. Peterson, I am making inquiry as to the application for membership procedure of the Advisory Council. Would you be so kind as to direct me to the appropriate link to gain information as to how best make membership application.

ANSWER:

Information on becoming a member can be found at https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services#FAQ.


A. Bell  |  04-19-2017

I'm looking at this document: https://aspe.hhs.gov/advisory-council-april-2017-meeting-presentation-ltss-subcommittee-recommendations

How did the panel votedon the LTSS recommendations?

Thank you for your help.

ANSWER:

The final version of the Recommendations is available at https://aspe.hhs.gov/advisory-council-recommendations.


M. Sharp  |  04-12-2017

Hello and thank you for another opportunity to provide input from the perspective of FTD -- one of the "related disorders". In addition to input on the recommendations voted on this morning I would like to reiterate the need for a clear and consistent terminology on dementia and emphasize the potential benefits that could come from a working group on dementia nomenclature as recommended by the research sub-committee.

But first, I would like to follow-up on the topic of the February's council meeting and announce that the FTD Disorders Registry was launched on [Date] and that within [x days] of it going live, [x#] of people registered, which exceeded expectations by far. The creation of the FTD Disorders Registry was a joint effort between The Association for Frontotemporal Degeneration (AFTD) and The Bluefield Project to cure Frontotemporal Dementia. Registry data will be used by advocacy groups, scientists, and clinicians to support research studies and clinical trials. It is both a Contact Registry and a Research Registry and will become a powerful new tool to help develop therapies and treatments for FTD. I urge you all to look up the registry online and please do not hesitate to contact me or AFTD for more information.

As the Program Manager at The Association for Frontotemporal Degeneration I speak to a lot of people coping with one of the various clinical diagnoses that fall under the umbrella of FTD. One of the most common complaints I hear is how frustrating and exhausting it is to repeatedly have to say "no, my spouse is not too young to have dementia" or "no it doesn't affect memory" and "yes FTD is a form of dementia but it's not the same as Alzheimer's". On top of everything else people coping with FTD will often have to educate others about the disease, including the medical professionals and healthcare providers they turn to for help. For them, the need for clearer and more consistent terms is painfully clear and even small improvement could help ease their burden.

We realize there are many reasons why developing a uniform nomenclature is a challenge. Not the least of which is the fact that we still do not fully understand the pathologies underlying the different causes of dementia. The NAPA council has already done a lot to promote a better understanding of different types of dementia. But as discoveries and breakthroughs are made, clear and accurate language will be needed to share the news and make the importance of dementia research clear to all the potential supporters and stakeholders. It would be unrealistic to expect a working group to unravel all the linguistic knots around dementia, but how we talk about it will guide what we do about it. I encourage the council to see the working group on nomenclature as both an opportunity for continued success in increasing awareness and understanding of dementia and necessary to gain the support required to accomplish the goals of the National Plan.


S. DeSanti  |  04-12-2017

Good afternoon. I am the Vice President of Medical Affairs, North America and Asia Pacific, for Piramal Imaging. I want to thank the council for the opportunity to make comments during this very important meeting.

Piramal Imaging markets Neuraceq™, a diagnostic radiopharmaceutical indicated for Positron Emission Tomography (PET) imaging of the brain to estimate beta-amyloid neuritic plaque density in adult patients with cognitive impairment who are being evaluated for Alzheimer's Disease (AD) and other causes of cognitive decline.1

Today, AD is usually diagnosed after an already symptomatic patient with a cognitive impairment undergoes an extensive clinical diagnostic workup. This workup typically includes family and medical history, physical and neurological examinations, psychiatric screen, laboratory tests (i.e. folate, B12 and thyroid blood tests) and imaging procedures such as computed tomography (CT) or magnetic resonance imaging (MRI) scans.

However, despite having acess to these mainstream diagnostic workups, it is clear that we are still far way from being able to early and accurately asses and characterize the cause of disease. A definitive diagnosis of AD can only be made post-mortum by histopathology which can reveal the presence of beta-amyloid plaques and neurofibrillary tangles. Recent post-mortem studies looking for AD pathology have shown that 10 to 30 percent of diagnoses based on clinical examinations alone are incorrect -- thus missing an opprtunity to better manage and provide care for patients who are suffering with the uncertainty of their cognitive decline.2

Our company is working to improve the diagnostic accuracy of patients by detecting the underlying pathologies causing the cognitive impairment. Combined with current diagnostic tests a PET scan with Neuraceq holds the promise to detect or rule out, with a high degree of sensitvity and specificity, the presence of beta-amyloid plaques in the brains of living patients. Studies have shown that diagnostic accuracy, physician confidence, and changes to patient management are seen when the results of the PET procedure, such as amyloid imaging are included as part of the diagnostic workup.3

Currently, beta-amyloid PET imaging is not covered by the Centers for Medicare and Medicaid Services (CMS) except for a limited number of scans performed under an approved Coverage with Evidence Development (CED) program. Per CMS program requirements, Medicare beneficiaries are eligible for one beta-amyloid PET imaging scan per lifetime, as long as the beneficiary is enrolled in a CMS-approved clinical trial.4

Since finalizing the CED decision in September 2013, CMS has approved four clinical trials of which three are actively enrolling with a total estimated beneficiary enrollment of 18,788. The bulk of patient enrollment is expected to occur through the Imaging Dementia -- Evidence for Amyloid Scanning (IDEAS) Study, which anticipates Medicare beneficiary enrollment of 18,488.5

Enrollment is expected to end in less than 1 year. Of the 46 million medicare beneficiaries over the age of 65, 15-20% are estimated to suffer from Mild Cognitive Impairment (MCI), a condition that increases the possibility of developing Alzheimer's or other dementias.6 However, fewer than 19,000 Medicare beneficiaries have access to beta-amyloid PET imaging as a covered Medicare benefit, due to the lack of clinical trial approvals by CMS. This means that less than 1% of the estimated 8 million to 11 million Medicare beneficiaries with MCI have access to beta-amyloid PET imaging.

This coverage ratio is lower than other Medicare CED programs, such as the National Oncologic PET Registry (NOPR), which enrolled over 100,000 Medicare beneficiaries7 and the Transcatheter Aortic Valve Replacement (TAVR) registry, which had registered almost 55,000 procedures by the end of 2015.8

While we recognize that CMS has the authority to institute CED decisions, Medicare is an entitlement program. All beneficiaries are supposed to have access to covered services and benefits. CMS is limiting coverage by not approving additional clinical trials under the beta-amyloid PET imaging CED. This is blocking beneficiary access to this important diagnostic tool, a benefit to which the beneficiaries are entitled. Furthermore, we are concerned that CMS has not approved clinical trials that will generate enough evidence to determine whether or not beta-amyloid PET imaging meets Medicare's "reasonable and necessary" standards for coverage.

We request that this Advisory Council ask CMS to explain how the current trials that have been approved under the existing CED will generate the evidence the agency needs to reconsider the PET coverage determination and efforts by the agency to develop or recruit investigators to develop new clinical trials that will generate other evidence necessary to reconsider the coverage determination.

Such an update provided in a public forum will inform stakeholders as to the current status of the CED determination, as well as publicize the types of research that the agency would like to see proposed in the near future.

We appreciate the opportunity to provide these comments, and we look forward to working with the Advisory Council to change the trajectory of Alzheimer's disease and related dementias. Piramal Imaging has also submitted written comments in advance of this meeting. Thank you.

NOTES:

  1. Full Neuraceq Prescribing information is available online: https://www.accessdata.fda.gov/drugsatfda_docs/label/2014/204677s000lbl.pdf.
  2. Beach TG, Monsell SE, Phillips LE, Kukull W. J. Accuracy of the clinical diagnosis of Alzheimer disease at National Institute on Aging Alzheimer Disease Centers, 2005-2010. Neuropathol Exp Neurol. 2012 Apr;71(4):266-73.
  3. Boccardi M, et al. Jama Neurology, 2016
  4. Additional details on CMS' coverage requirements are available online: https://www.cms.gov/Medicare/Coverage/Coverage-with-Evidence-Development/Amyloid-PET.html.
  5. IDEAS Study. ClinicalTrials.gov NCT 02420756: https://clinicaltrials.gov/ct2/show/NCT02420756.
  6. Alzheimer's Association. 2017 Alzheimer's Disease Facts and Figures. https://www.alz.org/documents_custom/2017-facts-and-figures.pdf.
  7. CMS. https://www.cms.gov/Medicare/Coverage/Coverage-with-Evidence-Development/NaF-18-PET-for-Bone-Metastasis.html.
  8. Grover F et al. 2016 Annual Report of the Society of Thoracic Surgeons/American College of Cardiology Transcatheter Valve Therapy Registry. Jour of Am Coll Cardiology (December 9, 2016). http://www.onlinejacc.org/content/early/2016/12/02/j.jacc.2016.11.033?_ga=1.92519133.1911975317.1484767598.

MARCH 2017 COMMENTS

J. Webster  |  03-02-2017

With the future of our nation's health care reform and the repeal and replacement of Obamacare still unclear, Dr. E.F. Group III is reaching out to Health and Human Services Secretary Price in an open letter encouraging him to assemble a Health and Wellness Advisory Committee to focus on the root cause of our nation's healthcare problems including prevention and the implementation of proven natural remedies.

The open letter is online at http://www.globalhealingcenter.com/natural-health/open-letter-to-secretary-tom-price/.

Price has the responsibility to advise the President on matters of health, welfare, and income security programs across America. The open letter urges Price to assemble a team of scientists, experts, and independent researchers who have no ties to the pharmaceutical, food, or chemical industries. Their job will be to evaluate the safety and effectiveness of all artificial ingredients, genetically modified foods, colors, dyes, fluoride, herbicides, pesticides, phthalates, refined sugars, preservatives, and other toxic compounds added to or used in food and beverage production. These have been linked to the cause of many degenerative diseases.

"Our existing allopathic model treats the symptoms of disease, not the root cause. It does not encourage wellness or disease prevention," said Dr. Group, CEO of Global Healing Center. "The root cause of disease is the accumulation and exposure to toxins that pollute our air, food, and water. We know they damage our health, make us sick, and harm the earth."

Dr. Group and his team of healthcare practitioners are willing to volunteer their time, effort, and expertise to begin this conversation and work towards healing America. America can't be great again until we make America healthy again.

Dr. E.F. Group III founded Global Healing Center in 1998 with the goal of providing the highest quality natural health information and products. He is world-renowned for his research on the root cause of disease. Under his leadership, Global Healing Center earned recognition as one of the largest natural and organic health resources in the world. Dr. Group is a veteran of the United States Army and has attended both Harvard and MIT business schools. He is a best-selling author and a frequent guest on radio and television programs, documentary films, and is quoted in major publications.


JANUARY 2017 COMMENTS

S. Peschin  |  01-31-2017

Good afternoon. I serve as President and CEO of the Alliance for Aging Research. Thank you for the opportunity to provide a public comment.

I have a few thoughts for the council to please consider today:

  1. As I mentioned at the October council, we would still like to see Dr. Hodes include data on clinical trial recruitment and participation numbers for each NIH- funded AD trial in his federal updates moving forward. While it is interesting for Dr. Ryan to provide overall numbers of 150+ trials seeking 70,000+ volunteers, it would be more helpful to see if some trials have more luck with recruitment than others, and then to explore why. These reports would ideally include progress on recruitment of minority populations.
  2. The council should consider exploring the creation of a Medicare reimbursement for healthcare providers to cover their time counseling patients about clinical trials. Such a reimbursement may serve as an incentive for them to better identify cases. There is also concern by some docs that they may "lose" patients to trials, which means a loss in their business, so it's important to address this issue as well. These are issues that CMS or perhaps MedPAC could explore. A great deal of time was spent by HHS' Healthcare Payment Learning and Action Network to identify approaches for patient attribution that would be acceptable to providers. Perhaps this could be a starting point for alleviating these concerns.
  3. As far as I can tell, outreach efforts on AD clinical trial recruitment have been relatively limited to within the ADRD community. There may be a lot more opportunities for clinical trial education if these efforts expanded out to the aging network, such as senior centers and state health insurance programs (SHIPs). The Alliance is partnering with PhRMA to develop a short "pocket film" to educate older adults about clinical trials, and we hope all of you will use this free tool when it's done later this year.
  4. One more idea: would HHS be able to ask each of its agencies to include a "Find out about research opportunities" banner with the clinicaltrials.gov button on the front page of their websites?

Last, I have one more comment. To the federal members and staff that serve this counsel, and to your thousands of colleagues back at your agencies: The Alliance for Aging Research believes that the work you do is important, and worth defending. We have hope that this new Administration and Congress will share our sentiment on several of the research funding, clinical development, and healthcare issues that matter to us, and we look forward to working with them on those issues. They may also disagree with us on other issues. But, nothing will prevent us from speaking out and standing up for what we know is right.

Thank you for the work you do, and please know that we support you.

Thank you for the opportunity to comment!


V. Helmly  |  01-30-2017

Hi, I am looking to connect with someone who may be able to assist me in addressing challenges to the structure and processes of implementing our state plan. I am currently working as the Georgia Alzheimer's Disease & Related Dementias State Plan Coordinator and we are working on improving the processes and procedures of the implementation of our state plan and I would love to speak with someone on the federal level about advice or best practices. Would you be able to direct me to the best contact for this?

Thank you so much!


M. Sterling  |  01-29-2017

It's increasingly difficult for many families, struggling to care for someone with dementia, to focus. The first week of the new administration has left us wondering what an uncertain future will bring. As I'm writing this, the Affordable Care Act is in serious jeopardy.

When you ask most Americans, "what impact will the repeal of the Affordable Care Act have on people with dementia and their families?", most have never even considered that it WOULD have an impact. People need to know.

My colleagues at the LEAD Coalition did a wonderful job of outlining the "actual facts" in a concise, must-read issue brief. We have copies for each of you. This is important information because repeal of the ACA could very well impact the goals and recommendations of this Council for years to come.

Here are the important provisions hanging in the balance that EVERYONE needs to be aware of and those that are most important to my family:

  • Medicare annual wellness visit with a cognitive assessment so we can detect issues early, before families are in crisis.
  • Protection for pre-existing conditions, critical for adults with early-onset dementia and their caregivers.
  • Innovative models of care -- so we can find a combination of affordable care and services that WORKS for people with dementia and their caregivers.
  • Medicare-Medicaid care coordination -- critical for families with loved ones in the later stages of dementia.
  • Medicaid expansion -- so those with dementia can remain in the community while preventing the impoverishment of their spouses.
  • Funding for patient-centered research on dementia. As you may remember, I am a Patient Research Partner and Ambassador for PCORI and serve on the advisory council for the National Alzheimer's and Dementia Patient & Caregiver Powered Research Network -- which is doing important clinical research and must continue to do so.
  • New requirements for nursing homes -- aimed at improving the quality of care that we expect for our loved ones.
  • Finally, support for young adult caregivers, so they can remain on their parents' insurance through the age of 26.

So in this new era of "alternative facts", let's not leave Alzheimer's families in the dark, only to find the rug has been pulled out from under them and they never saw it coming.


F. Li  |  01-27-2017

I am here on behalf of the Physicians Committee for Responsible Medicine, a Washington DC-based nonprofit organization working to advance medical research. Thank you to the NAPA Advisory Council and to all those working tirelessly on the National Alzheimer's Plan to lead the growing efforts to halt the devastating effects of dementia on individuals and our communities.

Although evolution of the Alzheimer's disease and related dementias (AD/ADRD) clinical trials play a central role in achieving the goal of preventing and effectively treating AD/ADRD by 2025, we urge the Council to recognize a number of major caveats and gaps with the current approaches. In particular, there are four major factors in the current drug development pipeline that have and will continue to impede the development of effective disease-modifying treatments:

  1. Preclinical Validity Cannot Hinge on Animal Models: Most current clinical trials initiate from testing drug candidates in genetically-engineered animal models and so do not accurately capture the human disease. In addition, physiological differences between species confound the roles of intrinsic mechanisms essential to the human disease process. Hence, treatments found to be effective in these animal models are often found to be ineffective in human clinical trials. Preclinical research must accelerate emphasis of human-based approaches. (See: http://www.altex.ch/All-issues/Issue.50.html?iid=150&aid=4 ).
  2. Related Conditions Should Not Be Part of Exclusion Criteria: AD/ADRD is often associated with chronic conditions such as cerebrovascular disease, type II diabetes, cardiovascular disease, and hypertension. However, with the exception of studies that explicitly search for links, these important comorbid conditions are too often part of exclusion criteria from many AD/ADRD clinical trials. These exclusions bias our science and miss critical opportunities for important therapeutic approaches that can directly address the chronic factors contributing to sporadic AD (see also #4). And they may preclude effective interventions coming out of clinical trials from being broadly applicable to all AD/ADRD patients.
  3. Reduce Reliance of Familial AD factors to Inform Sporadic AD Therapy: Drug targets for clinical trials are often based on rare genetic defects associated with the inherited form of the disease rather than the chronic form of the disease found in the sporadic AD population commonly associated with lifestyle factors. Moreover, potential drug candidates are often tested in patients with the common form of the disease who may or may not carry the targeted genetic risk factors.
  4. Tackle Lifestyle Factors on Even-Footing with Genetic Risk Factors: Current AD clinical trials primarily aim to modify the pathology associated with AD/ADRD rather than addressing the important underlying lifestyle factors that have effects -- both positive and negative -- on the prevalence and progression of dementias. While beta-amyloid and tau may be important hallmarks of the disease, they may be only pathological consequences and not causes. Hence, targeting these elements often fails to modify the disease or only temporarily ameliorates the symptoms. In contrast, lifestyle factors such as diet, physical activity, exposures to toxins (e.g. tobacco, air pollution), cognitive and social engagement are powerful modifiers (http://thehill.com/blogs/congress-blog/healthcare/311025-ensuring-the-21st-century-curesact-ends-alzheimers). Epidemiological studies have shown that these factors can influence both dementia as well as the chronic diseases associated with and likely contributes to AD/ADRD. A shift to clinical trials with increased focus on prevention and intervention in these realms would forward the science greatly as well as improve and save many lives. (http://www.impactjournals.com/oncotarget/index.php?journal=oncotarget&page=article&op= view&path[]=9175)

As the NAPA advisory council works to address the important challenges in clinical trial recruitment, it is essential that the efforts of thousands of patients, caregivers, clinicians and researcher be focused on the most promising targets. Support for future trials based on data derived from humans, preclinical investigation in human-based models, greater prioritization of targeting lifestyle risk factors such as diet will greatly improve our development pipeline for effective interventions to prevent or reverse AD/ADRD in our nation by 2025.


I. Kremer  |  01-27-2017

Thank you again to the Advisory Council for your deep engagement in, and strong support for, the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers. We look forward to delivering findings and recommendations that will inform your Nation Plan Update, improve research, and ultimately deliver tangible, transformative results for tens of millions people across this country.

In today's meeting, the Advisory Council is focusing its vision on clinical trials, on how to adopt new and better approaches. That is laudable, appropriate and evidently necessary. I would encourage the Advisory Council also to focus on other assets we have now, assets that work well and hold potential to work even better if properly sustained and strengthened. Two of those assets are dementia-relevant provisions with the Affordable Care Act (ACA) and our federal workforce.

Reasonable people can and do hold a variety of views about the ACA as a whole. But there is widespread agreement that repeal or reform of the ACA would have significant and potentially dangerous implications for people with dementia and their families. The LEAD Coalition recently released an ACA issue brief ( http://bit.ly/LEADCoalitionACA and attached as a PDF) providing an overview of nine elements of the ACA vital to the dementia community. I would encourage the Advisory Council to review the issue brief and to be vocal about the importance of sustaining and strengthening these and other elements of current law that benefit people facing dementia.

I would encourage the Advisory Council also to be vocal about the harmful consequences of a federal hiring freeze or, worse yet, outright reductions in agency bandwidth. It is imperative that the ACL, CMS, CDC, the VA and other agencies are at full capacity to deliver better care, support and quality of life for those facing dementia today. And for all who look forward to a time when science liberates us all from the shadows of dementia, we know it is imperative that the NIH and FDA have the staff necessary to deliver breakthroughs.

Thank you for your leadership.


M. Hogan  |  01-27-2017

Once again I appreciate the opportunity to address the Council this morning. In anticipation of the discussion of Clinical Trials, as I write these comments in advance, I am hopeful that issues related to those with Down Syndrome have been included in the morning discussion.

I understand that there are ethical considerations around consent and capacity for those with DS and other intellectual disabilities in regards to participation in clinical trials. However, I am hopeful that participation in the current DS Biomarker research is robust and that the outcome of these studies will provide very useful information for those with DS as well as the general population. I am also hopeful that there will be further efforts to include people with DS in preclinical medication trials in an attempt to delay the onset of AD.

Attached you will find an NIA/NIH document produced by the Alzheimer's Disease Education and Referral Center called: Researchers seek Alzheimer's clues in people with Down Syndrome, dated August 25, 2013 and updated in 2015 [https://www.nia.nih.gov/alzheimers/features/researchers-seek-alzheimers-clues-people-down-syndrome]. This may shed some light on the issue of DS and AD for those on the Council who remain under-informed about this topic.

5 years after the release of the first National Plan we continue to face many challenges for our family members with DS and other forms of ID. These include:

  • Lack of adult clinics that specialize in care of individuals with Downs Syndrome.
  • Lack of training for interns and residents in issues related to ID population at large.
  • Limited proactive planning for those aging with DS/ID.
  • Lack of access to appropriate diagnostic processes across settings and specialties.
  • Potential misdiagnosis or missed diagnosis of AD in individuals with DS (we are now seeing diagnosis of young adults with DS in there mid to late 20's and early 30's which suggests that there is over-diagnosis of AD and missed opportunities to explore and define possible reversible conditions in these younger adults).
  • An untrained work force with very limited information about healthy aging, how to support and care for those with a diagnosis of AD or other dementia and how to interface with other specialties like Palliative Care to insure that there is quality of life until end of life.
  • Lack of attention to side effects of pharmacology, especially in those with Down syndrome who develop seizures concomitant with the onset of dementia. Thus some individuals possibly remain grossly over-medicated and further compromised.
  • Struggling caregivers, across generations, who are dedicated to supporting their family member with DS/ID and AD or other dementia at home or advocating for them in an alternative care setting.
  • A limited voice at this table.

In an effort to provide medical information for this population, Dr. S. Keller, NTG Co-Chair and Drs. I. Lott, UC Irvine and Nicole Baumer of Boston Children's Hospital will address an upcoming 2017 Annual Conference for Neurologists on Neurologic Complications in Adults with IDD. Dr. Keller has reached out to Medical Schools to determine the curriculum inclusion for this population. He will also address Neurology Residents at Brigham and Women's Hospital in Boston focusing on the ID population. Additionally, it is his hope to have a round table discussion to address issues related to the needs of adults with DS as they transition to adult Neurology Departments. In the meantime a coterie of trainers from the NTG is providing seminars and webinars to Agencies and Professionals, including Direct Support Professionals, across the US in an effort to expand knowledge, improve care and facilitate further development of local trainers. We are a small group taking on Herculean tasks.

In an effort to provide much needed information to families and other caregivers, including Direct Support Professionals, the National Down Syndrome Society (NDSS), in conjunction with the NTG and Alzheimer's Association, is in the process of preparing a companion document to Aging and DS. This new publication will focus on DS and Alzheimer's disease and will be released at the UN on 3/21, World DS Day.

As Dr. Janicki has noted in his public comments, the NTG and colleagues in US, Canada, UK and Europe are involved in the writing of a number of articles related to ID and Dementia, with the focus on expanding the knowledge base and improving care outcomes for those with ID and Dementia. This effort, resulting from public and private support in Scotland, is to be noted and commended with the sharing of rich ideas and significant efforts across borders.

The NTG has begun a fledging peer support group for Family Caregivers. We are grateful to the NDSS and Cure PSP who assisted us in our efforts. Response to this monthly group has been most positive with a growing number of participants from across the US. Included in this group is a number of parents of young adults facing extraordinary decline in function with no clearly defined cause.

Today we face looming issues with the Federal Budget and changes to the affordable Care Act that could potentially have a disastrous impact on individuals with dementia as well as their caregivers. These concerns will be further noted by I. Kremer, our colleague from the LEAD Coalition, but demand the attention of all of us at this table and well beyond.

These noted activities reflect a dogged commitment to increasing attention to this special population. I assure you we will persist in our tireless effort to see that people with DS and other forms of ID will remain an integral part of the national discussion of Alzheimer's disease and other dementias. We look to you for continued support as we work to expand our public/private efforts.

Thanks, once again, for the opportunity to be here.


S. DeSanti  |  01-27-2017

Piramal Imaging is pleased to provide the following comments to the National Advisory Council on Alzheimer's Research, Care, and Services. Piramal Imaging markets Neuraceq™, a diagnostic radiopharmaceutical indicated for Positron Emission Tomography (PET) imaging of the brain to estimate beta-amyloid neuritic plaque density in adult patients with cognitive impairment who are being evaluated for Alzheimer's Disease (AD) and other causes of cognitive decline.1

Today, AD is usually diagnosed after a patient with a cognitive impairment undergoes an extensive clinical examination which typically includes family and medical history, physical and neurological examinations, psychiatric screen, laboratory tests (i.e. thyroid blood tests) and imaging procedures such as computed tomography (CT) or magnetic resonance imaging (MRI) scans. However, a definitive diagnosis of AD can be made only after death where an autopsy can reveal the presence of beta-amyloid plaques and neurofibrillary tangles. Post-mortem studies looking for accumulations of neuritic plaque densities and Braak neurofibrillary stages in the brain have shown that 10 to 30 percent of diagnoses based on clinical examinations are incorrect.2 Our company is working to improve the true positive and true negative rates of detection. When used with PET imaging, Neuraceq holds the promise to detect beta-amyloid plaques in live patients.

Neuraceq may be used to assist in the differential diagnosis of Alzheimer's disease or other dementia types. In a pivotal phase 3 clinical trial, Neuraceq was shown to have a high affinity to beta-amyloid plaques in the brain, a hallmark of Alzheimer's disease.3 A negative Neuraceq scan indicates sparse to no neuritic plaques and is inconsistent with a neuropathological diagnosis of AD at the time of image acquisition; a negative scan result reduces the likelihood that a patient's cognitive impairment is due to AD. A positive Neuraceq scan indicates moderate to frequent amyloid neuritic plaques; neuropathological examination has shown this amount of amyloid neuritic plaque is present in patients with AD, but may also be present in patients with other types of neurologic conditions as well as older people with normal cognition. Neuraceq is an adjunct to other diagnostic evaluations.4

In clinical practice, a patient suffering from cognitive impairment would undergo a clinical assessment by his or her clinician. If after the clinical assessment there is still some uncertainty regarding the cause of cognitive impairment, the clinician will then refer the patient to an imaging center for a beta-amyloid PET scan, using Neuraceq as the diagnostic agent. A radiologist/nuclear medicine specialist reads and interprets the scan and sends a report back to the patient's referring physician. The report includes the reader's findings about the presence of beta-amyloid plaques in the patient's brain. The referring physician can use the clinical findings with the results of the Neuraceq PET scan, including the presence or absence of beta-amyloid plaques, in their differential diagnosis of the patient. Both clinical and Neuraceq findings are important to consider when constructing the patient's treatment plan. Studies have shown that physician confidence in diagnosis is increased when results from betaamyloid scans are used.5

Currently, beta-amyloid PET imaging is covered under Medicare's Coverage with Evidence Development (CED) program. Per program requirements, Medicare beneficiaries are eligible for one beta-amyloid PET imaging scan per lifetime, as long as the beneficiary is enrolled in a CMS-approved clinical trial.6 Since finalizing the CED decision in September 2013, CMS has approved only three clinical trials with a total estimated beneficiary enrollment of 18,788. The bulk of patient enrollment is expected to occur through the Imaging Dementia -- Evidence for Amyloid Scanning (IDEAS) Study, which anticipates Medicare beneficiary enrollment of 18,488.7

To our knowledge, CMS has not provided a public update on this CED program at an advisory council meeting. We hope to hear an update from Dr. Ling as part of the Federal Workgroups Update at the next meeting on February 3, 2017. Considering that the theme of this advisory council meeting is clinical trials for Alzheimer's disease and related dementias and recruitment challenges, we urge the advisory council to request regular updates from CMS outlining the agency's progress on reviewing and approving new trials under the beta-amyloid PET imaging CED at the Council's public meetings.

Beta-amyloid PET imaging is intended to be used according to Appropriate Use Criteria developed by the Amyloid Imaging Task Force, Society of Nuclear Medicine and Molecular Imaging and the Alzheimer's Association, as an adjunct to other diagnostic evaluations in the following instances:

  1. A cognitive complaint with objectively confirmed impairment;
  2. Alzheimer's disease as a possible diagnosis, but when the diagnosis is uncertain after a comprehensive evaluation by a dementia expert; and
  3. When knowledge of the presence or absence of beta-amyloid plaque density is expected to increase diagnostic certainty and alter management.8

Between 15-20% of Americans aged 65 or older are estimated to suffer from Mild Cognitive Impairment (MCI).9 However, fewer than 19,000 Medicare beneficiaries have access to beta-amyloid PET imaging as a covered Medicare benefit, due to the lack of clinical trial approvals by CMS. This means that less than 1% of the estimated 8 million to 11 million Medicare beneficiaries with MCI have access to beta-amyloid PET imaging. This coverage ratio is lower than other Medicare CED programs, such as the National Oncologic PET Registry (NOPR), which enrolled over 100,000 Medicare beneficiaries10 and the Transcatheter Aortic Valve Replacement (TAVR) registry, which had registered almost 55,000 procedures by the end of 2015.11

While we recognize that CMS has the authority to institute CED decisions, Medicare is an entitlement program. All beneficiaries are supposed to have access to covered services and benefits. CMS is arbitrarily limiting coverage by refusing to approve additional clinical trials under the beta-amyloid PET imaging CED. This is blocking beneficiary access to this important diagnostic tool, a benefit to which the beneficiaries are entitled.

Furthermore, we are concerned that CMS has not approved clinical trials that will generate the evidence that the agency itself claims is required in order to determine whether or not beta-amyloid PET imaging meets Medicare's "reasonable and necessary" standards for coverage. In the CED decision memo, the agency stated that approved studies must address one of more aspects of the following questions:

For Medicare beneficiaries with cognitive impairment suspicious for AD, who may be at risk for developing AD:

  1. Do the results of PET Aβ imaging lead to improved health outcomes? Meaningful health outcomes of interest include: avoidance of futile treatment or tests; improving, or slowing the decline of quality of life; and survival.
  2. Are there specific subpopulations, patient characteristics or differential diagnoses that are predictive of improved health outcomes in patients whose management is guided by PET Aβ imaging?
  3. Does using PET Aβ imaging in guiding patient management, to enrich clinical trials seeking better treatments or prevention strategies for AD, by selecting patients on the basis of biological as well as clinical and epidemiological factors, lead to improved health outcomes?12

In talks with the IDEAS trial steering committee, agency staff have indicated that the flagship beta-amyloid CED trial that has been approved is not expected to generate enough evidence to reconsider the coverage decision. This is troubling, especially since CMS has not approved additional trials with a significant number of beneficiaries that would be expected to generate enough evidence to reconsider the coverage decision.

The Advisory Council should ask CMS to explain how the current trials that have been approved under the existing CED will generate the evidence the agency needs to reconsider the coverage determination and efforts by the agency to develop or recruit investigators to develop new clinical trials that will generate the evidence necessary to reconsider the coverage determination. Such an update provided in a public forum will inform stakeholders as to the current status of the CED determination, as well as publicize the types of research that the agency would like to see proposed in the near future.

We appreciate the opportunity to provide these comments, and we look forward to working with the Advisory Council to change the trajectory of Alzheimer's disease and related dementias. If you have any additional questions, please do not hesitate to contact me.

NOTES

  1. Full Neuraceq Prescribing information is available online: https://www.accessdata.fda.gov/drugsatfda_docs/label/2014/204677s000lbl.pdf.
  2. Beach TG, Monsell SE, Phillips LE, Kukull W. J. Accuracy of the clinical diagnosis of Alzheimer disease at National Institute on Aging Alzheimer Disease Centers, 2005-2010. Neuropathol Exp Neurol. 2012 Apr;71(4):266-73.
  3. AAN abstract 2012 Marwan Sabbagh (no published manuscript reference).
  4. Full Neuraceq Prescribing information is available online: https://www.accessdata.fda.gov/drugsatfda_docs/label/2014/204677s000lbl.pdf.
  5. Schipke CG, Peters O, Heuser I, et al. Impact of beta-amyloid specific florbetaben PET imaging on confidence in early diagnosis of Alzheimer's Disease. Dementia and Geriatric Cognitive Disorders. 2012; 33:416-422.
  6. Additional details on CMS' coverage requirements are available online: https://www.cms.gov/Medicare/Coverage/Coverage-with-Evidence-Development/Amyloid-PET.html.
  7. IDEAS Study. ClinicalTrials.gov NCT 02420756: https://clinicaltrials.gov/ct2/show/NCT02420756.
  8. Full appropriate use criteria are available online: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3733252/.
  9. Alzheimer's Association. 2016 Alzheimer's Disease Facts and Figures. https://www.alz.org/documents_custom/2016-facts-and-figures.pdf.
  10. CMS. https://www.cms.gov/Medicare/Coverage/Coverage-with-Evidence-Development/NaF-18-PET-forBone-Metastasis.html.
  11. Grover F et al. 2016 Annual Report of the Society of Thoracic Surgeons/American College of Cardiology Transcatheter Valve Therapy Registry. Jour of Am Coll Cardiology (December 9, 2016). http://www.onlinejacc.org/content/early/2016/12/02/j.jacc.2016.11.033?_ga=1.92519133.1911975317.14 84767598.
  12. CMS. https://www.cms.gov/Medicare/Coverage/Coverage-with-Evidence-Development/AmyloidPET.html.

M. Janicki  |  01-26-2017

I and Dr. S. Keller are the co-chairs of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG), a group formed in 2010 with a mission to advocate for people with intellectual disability and their families and other caregivers when an adult with intellectual disability is affected by dementia (http://www.aadmd.org/ntg). The NTG is an affiliate of the American Academy of Developmental Medicine and Dentistry and is associated with the Rehabilitation Research and Training Center on Developmental Disabilities and Health at the University of Illinois at Chicago.

Subject: NTG Activities on Information Development and Dissemination

The notion we wish to raise today concerns our efforts to create and disseminate transformative information related to dementia and intellectual disabilities. We recognize, as does the Council, that much of the general public, health care professionals, and even workers in the field of intellectual disability, are relatively uninformed about the nuances of dementia and how it affects adults with intellectual disability, as well as their spouses, friends, and caregivers. In concert with colleagues within the Alzheimer's and other dementias, intellectual disability, and university educational community, the NTG continues to develop materials in various media to inform and disseminate such information.

The basis for this notion is that many families have difficulties obtaining reliable information on recognizing dementia and how to best provide care and supports, in particular when their relative with intellectual disability is in the late or advanced stage of dementia and needing end-of-life specialized care. Further, we recognized that there are many nuanced issues that at time mirror those affecting adults with dementia in general, but also there are recognizable differences posed by lifelong intellectual disability. These differences can pose barriers to acceptance into generic services or add to confusion about how to provide specialized services. It is our hope at the NTG, as it is among our international colleagues in the intellectual disability and aging community, that this information will provide a basis for increased understanding of how dementia affects people with intellectual disability (as it might among other recognized 'special populations') and constructively influence and affect state and local planning, public policies, and clinical and service practices.

This past October, the NTG partnered with colleagues at the University of the West of Scotland and the University of Stirling (near Glasgow, Scotland) and held an International Summit on Intellectual Disability and Dementia. Invitees from numerous countries within Europe and from the USA and Canada attended and discussed a number of topical issues and deliberated on the state of knowledge. From these discussions, a number of working groups were charged to produce background materials summarizing the issues and producing publishable reports. These reports encapsulate the key aspects of the issues and contain information and recommendations that can help expand knowledge, influence policy, and enhance services affecting adults with dementia and intellectual disability. The NTG's goal in this effort is to complement the activities of the Council and the various federal and organizational partners, and continue to make such information available and help transform policies and services so as to be more helpful to families and adults affected by dementia.

Thus, we are pleased to report that since October the participants of the Summit and their host organizations and associations have been busy on developing a series of summative reports. To date, one of the prepared reports, "Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to Nomenclature" has been accepted for publication by the American Association on Intellectual and Developmental Disabilities' journal, Intellectual and Developmental Disabilities. Another, "Consensus Statement of the International Summit on Intellectual Disability and Dementia Related to End-of-life Care in Advanced Dementia" has been reviewed and is pending acceptance for a special issue on end-of-care topics, in the British journal, the Journal of Applied Research in Intellectual Disability. A third, "International Summit Consensus Statement: Intellectual Disability Inclusion in National Dementia Plans" has been submitted to the American Journal of Alzheimer's Disease and other Dementias and is pending review. A fourth, "Defining Advanced Dementia in People with Down Syndrome and other Intellectual Disabilities: Consensus Statement of the International Summit on Intellectual Disability and Dementia" has been submitted to the Journal of Intellectual Disability Research, a British publication, and is also pending review.

Another grouping of reports and summative statements are in various states of preparation. These will attend to a variety of additional topics, including the needs of family caregivers, the perspectives toward dementia of people with intellectual disability, quality of life and dementia, post-diagnostic approaches to care, and dementia-capable services design for providers.

It is our hope that the Council will consider the substance and recommendations of these reports when constructing future updates of the National Plan to Address Alzheimer's Disease.

These reports and publications are available from us and also posted on the NTG website -- http://www.aadmd.org/ntg.


M. Ellenbogen  |  01-25-2017

By way of this speech I am making a formally request that the NAPA committee takes this issue to the top level of the HHS management as I believe what you are doing is not complying with the law.

On Friday, January 6, 2017 1:07 PM I sent a email for the February 3 Meeting Attendance as you can see below. I was denied this access and I am not being treated fairly under the disability guidelines. For two years now I have been ignored and so many others with dementia are not being heard. This must change.

"Hi,

I am requesting to speak at the next meeting public comments for the February 3 for NAPA. I am specifically requesting: reasonable accommodation under section 504 of ADA (Americans with Disability Act) to present my portion of the speech presentation by computer-link with video, or a telephone link-up such as conference call.

Thanks so much for your consideration."


W. Mansbach  |  01-24-2017

I am the CEO of Mansbach Health Tools and CounterPoint Health Services. Many of you on the Council are familiar with our BCAT - Brief Cognitive Assessment Tools. I am honored to sit on the Maryland Governor's Alzheimer's Disease Council.

I ask this Council to include scientifically validated brain health programs as part of its comprehensive recommendations.

Our new ENRICH® program is one example:

There are four "steps" to ENRICH®:

  1. an explanation of the six brain-healthy habits to mitigate your risk for dementia;
  2. the free ENRICH® Calculator which measures how well you currently are managing these habits;
  3. the opportunity to take a cognitive self-assessment or schedule a "virtual" BCAT cognitive assessment; and
  4. suggested "next steps."

We developed this program to address the needs of family caregivers, adult children of those with dementia, and others who are concerned about their risk for developing dementia. Modifying risk factors, increasing brain health, and screening are important factors in early detection and perhaps in delaying the onset of cognitive impairment.

We'd be happy to assist the Council in developing programs to promote brain health, to screen for cognitive impairment, and to provide non-pharmacological interventions for those who are cognitively impaired.

For more information, please visit our new website, http://www.enrichvisits.com.


J. Lyons  |  01-23-2017

I am an author and care consultant who helps older adults find the care they need throughout the country.

Today, I'll discuss challenges that arise due to the behavioral and psychological symptoms of dementia. These often cause people to become combative and dangerous to themselves and others. They can't always be calmed or redirected. Sometimes, the police become involved because the situation is too volatile for EMTs.

Situations like this necessitate our: identifying triggers, identifying causes of delirium, and determining both pharmacological and non-pharmacological tools for dealing with the behaviors.

Unfortunately, the system isn't designed to deal with behavioral crises in those with dementia.

As examples:

Short stay evaluation for medication adjustment in specialized non-rehab communities is private pay only.

Medication adjustment can be done in short term rehab but Medicare only pays after a 3 day qualifying hospital stay plus a demonstrated need for PT, OT, or Speech Therapy.

Or, medication adjustment can be done in a hospital. But, many hospitals aren't equipped to handle people who wander or are aggressive. Those with that capacity are few and far between and often don't have beds available.

We need a more streamlined system to obtain and pay for care in a dementia crisis. Requiring qualifying hospital stays raises costs to Medicare. Using observation beds to avoid the appearance of unnecessary hospital readmissions prevents patients from qualifying for rehab.

I ask the Council to identify a way to allow Medicare to pay for medication adjustment and behavioral health in qualified facilities without requiring that the patient first be admitted to the hospital for three days.


N. Tatton  |  01-19-2017

Frontotemporal Degeneration Disorders -- the Rare Disease of the AD Related Dementias

Frontotemporal Degeneration (FTD) is the most common dementia in people under the age of 60. It is a rare disease affecting at best estimate approximately 60,000 people in the United States. As such, it presents unique challenges when recruiting for clinical trials compared to Alzheimer's Disease which currently affects more than 5 million people in the US.

FTD is a diverse group of disorders that can present with behavioral, cognitive, language and motor dysfunction. Clinically these disorders are grouped as behavioral variant FTD, primary progressive aphasia, progressive supranuclear palsy, corticobasal degeneration and FTD with ALS. Diagnosis is challenging because it is a rare disease and most health care providers have no or limited experience with FTD disorders. Less than 30% of the FTD disorders are caused by a known gene mutation. FTD disorders also progress fairly rapidly, patients live on average 6-11 years after diagnosis. And for behavioral variant FTD, published studies have reported that it may take as much as 3.5 years before an accurate diagnosis is made.

Persons with FTD can display clinical symptoms that overlap between the disorder subtypes and this can complicate obtaining an accurate diagnosis. And some of the symptoms of FTD can be confused with psychiatric disorders. Currently there is no simple test to distinguish if someone has FTD versus another dementia or psychiatric disorder.

  • Recruiting for clinical trials for FTD disorders presents unique challenges because of this complex history. Some of these challenges are:
  • Recruiting adequate numbers of patients for a trial because of it is a rare disease. Sporadic behavioral variant FTD account for about 70% of the FTD disorders. Multi-site clinical trials are often necessary to find adequate numbers of volunteers who are able to participate in a trial.
  • Enrolling the right patient in the right trial. A definitive FTD diagnosis is only made at autopsy. While the patient is alive, the diagnosis is considered 'possible' or 'probable' depending on the clinical symptoms that are observed. At present we cannot distinguish between sporadic behavioral variant FTD patients that have an underlying tauopathy versus sporadic patients with an underlying TDP-43 proteinopathy -- the two major protein pathology subtypes found at autopsy with FTD.
  • Identifying patients early enough in the progression of their disease state so that there is a possibility that the putative drugs may have an effect. Diagnosing FTD early and accurately contributes to this recruitment challenge.
  • Retaining patients for the full duration of the trial can be a challenge because of a narrow window of opportunity that the patient is physically capable of completing the trial requirements and understands informed consent.


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NOVEMBER 2016 COMMENTS

A. Pagano  |  11-01-2016

I'm working on a story about Physician Assisted Suicide in the United States, and though it's currently not legal for patients with ADRD, I'm wondering if you've addressed how it could affect end-of-life planning for these patients if it were legalized in the future.

I'd love to speak to someone working on the National Alzheimer's Project Act about this issue. Is that a possibility?


OCTOBER 2016 COMMENTS

I. Kremer  |  10-25-2016

Thank you to the Advisory Council for your deep engagement in, and strong support for, the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers. Formation of summit advisory committees of people living with dementia and of caregivers, and their inclusion on the summit steering committee itself, reflect your commitment to the centrality of their role in decision-making. Their voices are essential to ensuring that the summit produces findings and recommendations that meaningfully improve their quality of life.

Thanks also to the National Institutes on Aging for its robust commitment to care and quality of life topics (https://www.nia.nih.gov/research/initiatives/concept-proposals-alzheimers-funding-opportunities#care) among 26 new Concept Proposals for Alzheimer's Funding Opportunities, (https://www.nia.nih.gov/research/initiatives/concept-proposals-alzheimers-funding-opportunities) approved at its recent NIA Advisory Council meeting. This reinforces positive steps planned in the FY 2018 professional judgment budget, (https://www.nia.nih.gov/alzheimers/publication/stopping-alzheimers-disease-and-related-dementias/about-fy-2018-bypass-budget) particularly NIH's proposal to nearly triple the amount of new funds dedicated to research on care and caregiver support from $9.8 million in the FY 2017 professional judgment budget to $28 million in the FY 2018 professional judgment budget.

I also offer congratulations to everyone who made possible the recently agreed upon Prescription Drug User Fee Act commitment letter. (http://www.fda.gov/downloads/ForIndustry/UserFees/PrescriptionDrugUserFee/UCM511438.pdf) I hope the NAPA Advisory Council will urge Congress to adopt PDUFA VI reauthorization without delay. For all who look forward to a time when science liberates us all from the shadows of dementia, we know it is imperative that the Food & Drug Administration has all the tools necessary to efficiently review breakthroughs for safety and efficacy.


M. Janicki  |  10-25-2016

I and Dr. S. Keller are the co-chairs of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG), a group formed in 2010 with a mission to advocate for people with intellectual disability and their families and other caregivers when an adult with intellectual disability is affected by dementia (http://www.aadmd.org/ntg). The NTG is an affiliate of the American Academy of Developmental Medicine and Dentistry and is associated with the RRTC on Developmental Disabilities and Health at the University of Illinois at Chicago.

The issue we wish to raise today concerns the issue of nomenclature related to dementia as it applies to intellectual disability. Reviews of publications (whether journal articles, book chapters, or reports and plans) involving intellectual disability show mixed uses of terms that generally relate to dementia or the diseases associated with it. Terms in use (including dementia, Alzheimer's, and other similar descriptors) lack precision or consistency when applied inappropriately. Some of this may be attributed to a lack of understanding of the distinction in the terms, the nuances involved with neuropathologies, or inconsistent use of language as well as absence of or inconsistency in an agreed upon core group of methods used in diagnosis. However, in the intellectual disability field this lack of precision in language in and of itself affects the understanding of the condition under discussion and confusion is further increased by a lack of agreement on common terminology in the domain of 'dementia'.

This lack of precision is not solely found in the intellectual disability field, as witnessed by recent efforts in the mainstream Alzheimer's and dementia field to address the same issue and in discussions held by the Council. The concern over coherency and lack of agreement on terminology within the intellectual disability field was recently discussed at the International Summit on Intellectual Disability and Dementia, held at the University of the West of Scotland (nr. Glasgow, Scotland) on October 13-14th -- which was co-sponsored by the NTG. Many of the same issues raised by the Council were echoed at the Summit, with the added concern that much needs to be done to reinforce and emphasize terminological precision and clarity among workers in the field of intellectual disability as the distinctions between the diseases associated with dementia and the expressions of dementia are often confused.

We recognized that the precision in terminology benefits reporting and communicating among researchers and enables the furtherance of scientific goals and findings. With this in mind, the Summit draft report recommended that scientific reports in the field of intellectual disability carry more precision with respect to terms employed and the final Summit report contain a taxonomy of terms typically found in dementia reports and documents, so as to provide guidance and a resource for researchers, administrators, clinicians, paid carers, and others who need to understand and use more precise terminology.

However, with particular acknowledgement of the use of descriptors when employed in general applications, the participants at the Summit noted that it would be beneficial to avoid 'high science language' in documents directed toward general readership audiences so as to facilitate understanding. Yet, we recognized that terms and definitions that are in common usage can help to ensure the communication of messages, but may add to the lack of precision. Further, creating or using definitions that minimize the seriousness, course, and eventuality of brain changes leading to dementia -- which may lead the public to believe that dementia is no more impairing that a minor aging-related discomfort and thus not worthy of concern -- can leave conditions untreated and eventualities devoid of planning. This is a conundrum in the field of intellectual disability, as communicating the definition and process of dementia to people with intellectual disability often creates a challenge. With this in mind, we suggest that to enable understanding, language and phrasing needs to be at a word-level that persons communicating with self-advocates or adults affected by dementia can effectively convey concepts associated with dementia. Further, the concepts need to be communicated in a manner so as to convey the seriousness of the condition, while not creating confusion or undue anxiety.

Given the concerns raised, the NTG supports, with two caveats, recommendation #4 in the 2016 US National Plan Update, which states that "Emphasis should be given to the standardization of terminology in dealing with cognitive and dementing disorders." The Update further recommends that "an integrated conference should be convened to develop consistent language for cognitive disorders among the scientists, care providers and the public... [and there is a need to] engage all of the stakeholders around these issues to reach a consensus for the benefit of persons with dementia, their family members and caregivers, and the scientific and service communities." We support this recommendation with two caveats: First, that the discussions around standardization recognize varied comprehension levels and produce variations in standardized definitions the reflect the varied educational and intellectual levels of the readers. Second, that representatives of the field of intellectual disability be invited to be participants at the 'integrated conference'.


M. Sharp  |  10-25-2016

AFTD is committed to helping anyone and everyone living with an FTD disorder find the information, resources and support they need to cope with the challenges they face. As far as we know, outside of the few families carrying an autosomal dominant form of FTD, all people have an equal chance of developing the disease regardless of their racial or ethnic background. However, we also realize that statement reflects how much we still don't know about the biology and natural history of FTD as much as anything else.

As a rare disease advocacy organization AFTD knows how scarce appropriate care and services for FTD are and how hard it is for people to find help and support or even basic information about the disease. We shudder to think how many people the current prevalence estimate of 50-60 thousand people in the US are missed because they cannot find the expertise and resources required to diagnose a disease as unusual as FTD. We also understand that addressing the health disparities discussed today is an important part of addressing that problem and a necessary in order to make a more accurate prevalence estimate for FTD.

In contrast to many rare diseases, our understanding of the basic biology of FTD has made significant advances over the past few decades, which would not have been possible without the support and attention NIH and NINDS has given to FTD research. But there are still many basic questions about FTD that need to be answered before we can begin to understand health disparities in a disease as diverse and complicated as FTD.


S. Peschin  |  10-25-2016

I serve as President and CEO of the Alliance for Aging Research. Thank you for the opportunity to provide a public comment.

I have 3 recommendations for today:

  1. Our first request is for HHS to ask Dr. Hodes to include in his federal updates moving forward, data on clinical trial recruitment and participation numbers for each NIH- funded AD trial. These reports should include progress on recruitment of minority populations, as was highlighted today.

    Our collective hope would be for trials to meet recruitment targets. But research shows that this is unfortunately not always the case. The Tufts Center for the Study of Drug Development reported in 2013 that 37% of all clinical trial sites failed to meet their enrollment goals, and 11% never even enrolled a single patient.

    If this is the case with AD trials, in whole or in part, then clinical trial recruitment should play a bigger role in the council moving forward.

  2. Our second request is for the NIH to bridge its Alzheimer's disease research priorities with regulatory gaps identified by the FDA in basic science, biomarkers/surrogate endpoints, and drug development. Since the science is developing rapidly, NIA and FDA would benefit from ongoing conversation and updates on progress toward filling the scientific gaps. The Accelerate Cure and Treatments for Alzheimer's Disease--or ACT-AD--coalition, which the Alliance chairs, will be tackling this topic at our upcoming meeting on Wednesday, November 16.

  3. On a similar note, we will like to see the FDA's Division of Psychiatry Products (DPP) more involved in the council and National Plan recommendation process, particularly as the focus of the council has shifted to care and since there is now increased interest from industry in developing new treatments for behavioral symptoms. If they are not doing so already, DPP could participate in the NIH care summit planning work as well as CMS' National Partnership to Improve Dementia Care to start. Both disease-modifying and symptomatic regulatory approaches and challenges should be mutually regarded in HHS' National Plan to Address Alzheimer's Disease. AD and related dementias are commonly viewed as neurodegenerative diseases only, and we would like to see more focus on the mental health treatment and care issues that encompass these diseases.

Thank you for the opportunity to comment!


M. Hogan  |  10-25-2016

Thank you for this opportunity to once again address the Council. As you may know I have a vested interest in people with Down syndrome (DS) who are at an increased risk to develop Alzheimer's disease at a much earlier age.

People with ID are specifically included in Strategy 2 H: Improve care for populations disproportionately affected by Alzheimer's disease and populations facing care challenges. Today we heard about the Gaps and Barriers to reaching and treating racial and ethnic groups referred to in Strategy 2 H. I am hopeful that we can continue to address and discuss the Barriers and Gaps in reaching and treating those with Intellectual Disabilities including DS, as part of Strategy 2 H.

In August 2016 I was at the Advisory Council meeting and heard the presentations from Indiana University and UCLA on their Aging Brain and Dementia care programs. We heard also about Team Integration and Home Based Workforce and lastly about the Value of Palliative Care. Since our public comments in August were limited to what was previously submitted, I would like to briefly to return to two of these topics.

The Aging Brain and Dementia care programs included specific goals that were directed at the general population and caregivers. The UCLA program included a dyad approach, recognition of the ADRD journey, comprehensive community based care with direct services to patients and families and a co-management model of care utilizing the services of a NP Dementia Care Manager. It included workforce development and family training. The outcome reflected patient, caregiver and physician outcomes that were all very favorable.

This type of support system would be most beneficial for individuals with ID, their family members, care partners, along with attending physicians.

  • How can we create opportunities to experiment with this model for those disproportionately affected by AD, including those with ID/DS?
  • How can we better integrate effective models of care to be inclusive of all of our diverse populations affected by ADRD?
  • When we have separate service delivery models, we often do not have equal service delivery. How can we reduce the gaps in reaching and treating all of those referred to in Strategy 2 H?
  • How can we create confidence and foster dialogue and inclusion across providers, i.e. Aging, Dementia, Healthcare?

The presentation on Palliative Care resonated strongly for me. Like many individuals with DS and ID, my brother Bill had numerous co-occurring conditions that resulted in pain. With the diagnosis of AD, there was little regard for the impact that these conditions continued to have on him. In the presence of a diagnosis of AD, all was attributed to this disease process. As a result he suffered greatly for the last year and a half of his life, despite our best efforts to advocate for pain management.

Individuals with ID have a history of marginalization in health care. Individuals with AD have experienced this same marginalization in the past, especially in the area of palliative care. It is encouraging to see the increased awareness and availability of palliative care for those in the general population diagnosed with ADRD. It is time to expand palliative care to include those with DS and other forms of ID.

The World Alzheimer's Report 2016 points out the importance of palliative care. In essence it states in part:

  • Every person with a progressive illness has a right to palliative care.
  • That good dementia care implicitly reflects a palliative care approach

In small nations like the UK, Scotland and Ireland, there appears to be both a greater discussion of and improved system of delivery of dementia care, including palliative care. We have much to learn from these countries.

In an effort to enhance awareness of issues related to pain for those with ID and dementia, I have attached material from the UK.

  • How can replicate/disseminate this information in the US?
  • How can we raise awareness of behavior as communication of an unmet need even in those with ID and ADRD?
  • Lastly, how do we eliminate the possibility that those with ID and dementia will be left to suffer needlessly?

Thank you once again for your willingness to listen, reflect and act on behalf of this underserved population.

ATTACHMENT:

Do You Recognise Pain in Someone with a Learning Difficulty and Dementia? [Available as a separate link: https://aspe.hhs.gov/pdf-report/napa-public-comment-attachment-guide-gps]


M. Sterling  |  10-25-2016

I am the co-founder of Connected Health Resources, (http://www.connectedhealthresources.com/) Ambassador for PCORI, (http://www.pcori.org/) Advisory Council member for the Alzheimer's Patient and Caregiver Powered Research Network, (http://www.alzheimerspcprn.org/) and recovering family caregiver for multiple parents with dementia.

Since I last spoke to you, my mom's journey with dementia has come to an end. Her loss leaves a huge hole in the world, but her legacy remains. As a nurse, her focus on person-centered care -- that she delivered for 40 years to each and every patient -- is a model for aspiring nurses everywhere.

As a 42-year breast cancer survivor, her participation in several important breast cancer studies continues thanks to a wonderful research team at Johns Hopkins.

And I am honoring her legacy as a caregiver by working with my friend D. Brown at Caregiving.com to host the first annual National Caregiving Conference, (http://www.caregiving.com/national-caregiving-conference-hub/) December 2nd and 3rd, in Chicago. This is a conference by, about, and for family caregivers -- to include those who care for individuals with dementia. Sorry, but we just couldn't wait for the 2017 Care and Services Summit!

Our conference is part of a movement to ensure that all family caregivers have the help and support they need so they don't have to give up their lives while caregiving, but have the solutions they need to KEEP their lives. We want to spark important conversations about what we need as family caregivers and former family caregivers in our communities, our workplaces and our healthcare system.

We want family caregivers (and professionals who support them) to connect and share, to learn, to be inspired. We have a very special guest joining us to do just that: former caregiver and Grammy-award winner P. Austin (http://pattiaustin.com/) will bring her incredible voice to our conference venue.

True to form, I will be teaching a pre-conference intensive course, (http://www.caregiving.com/national-caregiving-conference-hub/first-annual-national-caregiving-conference-agenda/pre-conference-intensives/) appropriately named "Turning Caregiving into Activism."

Please join us in Chicago for this ground-breaking event, which would not be possible without wonderful sponsors like Eli Lilly! You can find details at Caregiving.com.


R. Louie  |  10-24-2016

Reading the meeting summaries from January, April and August this year, I saw very little about promoting therapeutic clinical trials (aside from caregiving), except for mentioning of the AD Clinical Trials Consortium with very few details (I did find the FOA/RFA). I noticed that both NINDS Director Koroshetz and NIA Director Hodes included the NEJM Satizabel /Framingham paper in their research / funding reports. Although this paper shows that AD incidence may be decreasing in the Framingham cohort, US AD mortality is increasing in contrast to heart disease and stroke, according to the CDC (cited in our blog piece below). Our blog piece examines publications as a surrogate for clinical research efforts.

http://www.seattletimes.com/opinion/appoint-an-alzheimers-czar-and-treat-it-like-aids-or-cancer/

http://thehealthcareblog.com/blog/2016/04/20/will-new-funding-improve-alzheimers-dementia-outcomes/


W. Mansbach  |  10-22-2016

I am the CEO & Founder of Mansbach Health Tools, LLC and the CEO & President of CounterPoint Health Services. I am honored to sit on the Maryland Governor's Alzheimer's Disease Council.

At our research center, we are currently engaged in two important projects. First, we are working on the development of a construct called cognitive-functional hardship (CFH) which will help identify at-risk adults and older adults in the community. The term "at-risk" refers to people who have challenges performing everyday tasks due to cognitive impairments, especially in the area of judgment. Second, we are developing a new test of practical judgment.

While researchers search for a cure, there is an immediate need to address the challenges of those affected by dementia now. This includes increasing early detection and mitigating safety risks posed by the disease.

First is the challenge of identifying dementia. Everyone on the Council understands the importance of early detection and identification of dementia. We at Mansbach Health Tools, through our Brief Cognitive Assessment Tools (the BCAT), are able to identify people as early as during the Mild Cognitive Impairment (MCI) stage and to differentiate among the different subtypes of MCI. Ideally, people with cognitive impairment would receive an early diagnosis which then would allow them and their families to create realistic plans and expectations for their future care needs. However, obtaining a diagnosis often is difficult. Access to screening can be challenging due to geography, mobility, and socioeconomic status -- creating health disparities. To help mitigate some of those challenges, we are able to provide screening through our Virtual Visits -- telemedicine available to anyone who has access to a telephone, computer, or tablet with a camera and phone service. We strongly recommend that the Council further explore telemedicine opportunities in identifying dementia.

Second is the challenge of addressing the safety risks caused by living with dementia. To best address these challenges, we need to identify the person's level of Cognitive Functional Hardship (CFH). We define cognitive-functional hardship as the difficulty one experiences in independently maintaining one's home environment and performing (without assistance) everyday activities as a result of cognitive decline. Persons with CFH have difficulties performing activities of daily living (ADLs) and / or instrumental activities of daily living (IADL) because of cognitive deficits. Once CFH is identified, a plan can be developed to protect vulnerable individuals at-risk for a myriad of problems, including falls, re-hospitalizations, medication errors, and other injuries.

It is important that all screening tools be sensitive, specific, and appropriate for the target patient. It is also important that the tools provide practical information valuable to the patient and caregivers. For example, someone with CFH might be able to remember THAT they have to take medication but not remember HOW to take the medicine correctly. Armed with relevant and accurate data, people with dementia and their caregivers can identify and mitigate risks to safety through developing accurate care plans, allocating appropriate resources, and implementing monitoring plans to identify when needs change.

Scientifically validated, highly sensitive, and accurate screening tools that can be administered in person or through Virtual Visits are an important means of early identification of dementia and of monitoring changes as the diseases progress. They also are the basis of creating practical care, safety, and financial plans to help those who are living with dementia and their families.

More detailed information is available on my website: http://www.theBCAT.com. I am happy to provide any additional information as needed.


J. Lyons  |  10-22-2016

I am an author and care consultant who helps older adults find the care they need throughout the country. Most of the people I serve have some form of dementia. Many have behavioral issues that make it difficult for them to remain safely at home and difficult for them and their families to find an appropriate care setting.

I often refer to my clients (usually the adult children of the person with dementia) as the Club Sandwich generation -- stuffed between parents, children, careers, spouses, financial security, and community expectations. To further the sandwich analogy, a health crisis often acts like a panini press -- squishing everything together, applying heat, gluing all the parts together with cheese, and toasting the edges. One hopes that it doesn't burn the entire thing. It's impossible to undo.

To further complicate things, the practical manifestations of dementia look different in different settings. People living with dementia at home face different challenges than those who are living in an assisted living, memory care, nursing home, etc. Even within the same type of care setting, there are different costs, different services, and different styles. There is no one-size-fits-all solution.

The practical aspects of dealing with dementia require a team approach joining the public and private sectors with people with cognitive issues and their families.

To that end, I urge the Advisory Council to:

  1. Establish additional public/private partnerships that address medical, financial, legal, practical, family, and housing needs.
  2. Create an educated consumer base
  3. Partner with programs to keep caregivers healthy -- including cognitive and emotional health.

Thank you for your time. I would be pleased to provide additional information. And, if the Council would find it helpful, I would be pleased to organize a bus tour to show what dementia looks like in various care settings.


N. Satyadev  |  10-21-2016

I am submitting this public comment to introduce The Youth Movement Against Alzheimer's (YMAA) /why-ma/. YMAA is the nation's largest youth-led 501(c)3 nonprofit organization that mobilizes high school and college students across the nation to take on the fight against Alzheimer's. The movement is powered by passionate young leaders who wish to age in a world without Alzheimer's. Currently we have about 25 chapters scattered across the nation, including 8 high school chapters. Alzheimer's is not just an old person's disease and young people do care. At the founding UCLA chapter, undergraduate volunteers have provided over 2,000 hour of unpaid respite care for people diagnosed with the disease. Additionally, YMAA has secured $5000 to create an Alzheimer's research scholarship program where selected students would get hands-on research experience for doing Alzheimer's research. In the year to come we are projected to scale to 100+ campuses. We believe the cure will emerge from the power of the youth. Council, thank you all for your amazing work in guiding our nation towards effective care treatments and prioritizing the cure for those affected by this disease. We hope to build relationships with each of you in the future months and years to effectively rally the nation's youth in our common fight.

M. Ellenbogen  |  10-06-2016

I am so thankful to be still here. Many of my friends who were living with dementia have died and others are no longer capable of speaking. I am one of the lucky ones. My Alzheimer's is progressing very slowly. While that is good news it is also bad news. I will be forced to endure the worst part of this disease even longer than most. Knowing what I know now that will be like being tortured until I die. While I try to stay positive theses days and live life to the fullest, I am in pain every day from the frustration of not being able to be the person I was once. I continue to decline in to a childlike state.

Dementia, including Alzheimer's, is the most expensive disease we face. It is costing us more than heart disease and cancer. It is the third cause of death in the United States; more than 500,000 people die from Alzheimer's each year! We all get caught up in the big numbers, so I will break them down so they are more relatable.

  • 41,666 is the average monthly death rate
  • 9,615 is the average weekly death rate
  • 1369 is the average daily death rate
  • 57 is the average hourly death rate.

This is equivalent to almost three 747s crashing every day. Yet there is much neglect and discrimination regarding funding for Alzheimer's and related dementia research.

Preventative measures for breast cancer, heart disease and HIV have all made tremendous progress since the federal government made significant investments into research. Comparable investments must be made for dementia so we can accomplish the same successes, while saving millions of lives and trillions of dollars.

If we don't act now this disease has the potential to bankrupt this county. This is the most expensive disease in America. In 2016 $236 billion will be spent on Alzheimer's in terms of care and medication, with Medicaid and Medicare spending $160 billion. And unless you take action, the cost to Medicare alone will increase 365 percent to $589 billion by 2050.

Our investment today will lead to huge savings for the government and public, not to mention the lives saved. People with dementia are faced with discrimination at many levels and they lose their civil rights. That must change; we are still people and deserve to be treated as such. A person with cancer would never be treated the way we are. We need you to start making more of an effort to educate the public and restore our rights.

A few years ago I would have said I had no hope, but that has changed to 2.5 percent. I do believe we are closer to a cure today based on what has been learned from all the failures. I am so grateful that the budget has been increased to $991 million, but that is still far short of the two billion dollars that was said was needed years ago.

In my opinion we need a czar for dementia just like Vice President Biden is to cancer and it sure worked for HIV. We are definitely at the tipping point. You have the power to make this happen. Please, I implore the House of Representatives, the Senate and the respective appropriations committees: Make the hard choices; increase funding for Alzheimer's disease by at least one billion dollars. Do everything necessary to ensure that Alzheimer's disease gets the exposure, commitment and funding necessary to change the course of the disease.

If you have not yet been touched by this devastating and debilitating disease it's just a matter of time.


SEPTEMBER 2016 COMMENTS

C. Holly  |  09-16-2016

Unfortunately, the U.S. Government is not supporting Alzheimer's Disease research enough when one compares it to the funding received for cancer, stroke and heart disease research. I, as an individual, have made donations to the local Alzheimer's organization. More funding is needed; more marketing for more funding is needed.


J. Marshall  |  09-06-2016

I saw a documentary on NOVA that discussed Alzheimer's along with the plethora of ongoing research. In it they stated that the disease is caused by plaques and neuron tangles that form in the brain. But the startling finding was that the plaques begin to form some twenty years prior to the presentation of observable symptoms. Wouldn't it make sense to increase screening for the general population for these brain plaques? Then individuals who had no idea they had the precursors for this disease might be able to enroll in clinical trials and/or get involved in studies to find better data. Perhaps, if caught early enough, the reasons for the formation of these plaques could be more easily determined. It would also provide researchers with a larger number of participants for their studies. Then they might be able to find some previously unrecognized correlations in peoples' lifestyles or perhaps exposures to toxins that might be instrumental in the plaque forming process. The documentary did mention gene mutations but these mutations are not all due to hereditary influences.

I just wanted to share some thoughts and I thank you for listening.


AUGUST 2016 COMMENTS

M. Khachatryan  |  08-23-2016

I am with the Youth Movement Against Alzheimer's. I am contacting you about non-federal membership for the Advisory Council on Alzheimer's Research, Care, and Services. I am having some trouble finding information on how an organization representative may become a non-federal member and what the responsibilities are for the member. What does it mean to be a non-federal member? (i.e. Must non-federal members always attend quarterly meetings, how does a member prepare for them, when/how will the next nomination process happen, how much time commitment, etc) & any other information you think will be useful.

Thank you for your time and consideration! Looking forward to hearing back from you.

ANSWER:

Information on how non-federal members are chosen can be found at https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services#FAQ.


A. Uray  |  08-10-2016

I am doing a project on alzheimers for school. Could you please tell me how much the US will spend on alzheimers research for 2017 ? How much they spent in 2016 and 2015?


JULY 2016 COMMENTS

J. Lyons  |  07-29-2016

I am an author and care consultant who helps older adults find the care they need throughout the country. Most of my clients have some form of dementia. Many have behavioral issues that make it difficult for them to remain safely at home and difficult for them and their families to find an appropriate care setting.

I urge the Council to continue to support people with dementia and their caregivers while we search for a cure. I understand the challenges posed by limited resources and the need for increased funding for research in order to find a cure. At the same time, people are suffering now and care is expensive -- both in direct care costs and in the costs of caregivers leaving the workforce or reducing hours in order to be a caregiver.

That economic reality means that the public and private sectors need to work together to create wrap-around solutions for people with cognitive issues and their families. To that end, I propose that the Advisory Council work to:

  1. Establish additional public/private sector partnerships to develop practical, implementable plans and solutions for people with dementia and their caregivers. This includes addressing medical, financial, legal, practical, family/caregiver, and housing needs.
  2. Continue to identify and work with industry experts and thought leaders in care coordination.
  3. Create an educated consumer base through developing and disseminating accurate and culturally sensitive materials.
  4. Identify and partner with programs to keep caregivers healthy -- including cognitive and emotional health.

I would be pleased to provide additional information.


A. York  |  07-27-2016

Thank you once again for giving the Eldercare Workforce Alliance, a coalition of 31 national organizations committed to addressing the immediate and future eldercare workforce crisis, the opportunity to offer comments. Because we believe that access to quality health care for older adults with cognitive impairment is vital to healthy aging, we sincerely appreciate the continued inclusion of the eldercare workforce in the National Plan to Address Alzheimer's Disease. We commend the Public Members of the Advisory Council on Alzheimer's Research, Care, and Services for your work.

EWA is especially grateful that you are taking time today to focus on training of the direct care workforce. To meet the demand for services and address high rates of turnover, direct care worker jobs should offer comprehensive training, certification, and career advancement opportunities. Dementia care training is essential to this. EWA also specifically applauds the Advisory Council's 2015 recommendation to prepare a workforce that is competent to deliver care to persons with advanced dementia and their families under 7b. In addition, EWA supports recommendation 9b to research the impact of caregiving and quality of life of caregivers.

EWA would like to stress the importance of the Advisory Council's support of geriatrics and gerontology education and training programs responsible for preparing the health care workforce that will be charged with implementing the National Plan. This responsibility falls primarily to the Health Resources and Services Administration (HRSA), which administers the programs within Title VII of the Public Health Service Act. In recent years, funding for most of these programs has remained level. As noted in previous recommendations from the Council, additional funding is essential if we are to expand the activities of these programs to address the needs of the growing number of older adults with Alzheimer's disease, related dementia, and other chronic conditions.

July 2015, HRSA awarded 44 grants in 29 states for the Geriatrics Workforce Enhancement Program (GWEP). The GWEP is the only federal program that increases the number of faculty with geriatrics expertise in a variety of disciplines who provide training in clinical geriatrics, including the training of interdisciplinary teams of health professionals, students, faculty, practitioners, direct care workers, and family caregivers. The new GWEP program is designed for greater flexibility for grantees to meet the needs of their community.

Some GWEP programs were awarded additional funding for Alzheimer's Disease Prevention, Education and Outreach program, which supports interprofessional continuing education to health professionals, including direct care workers, and family caregivers on Alzheimer's disease and related dementias. Regardless of whether the GWEP applied for this additional funding, all GWEP programs have a component of dementia care training.

In 2018, the new grant cycle for the GWEP grant will begin. Congress is also looking at the authorizing language Title VII and VIII to update the language to the current program. This is an opportunity for us to expand the program to additional communities where gaps exist.

Thank you again for the opportunity to be with you today and to share EWA's thoughts on strategies for ensuring that individuals with Alzheimer's and related dementias, and their families, can get the care and support they need. We greatly appreciate your work and your continued emphasis on preparing a well-trained workforce, including family caregivers, to meet the needs of all older adults.


M. Ellenbogen  |  07-27-2016

Unfortunately I have struggled to write something because I have had a number of bad days. This is the exact reason why I have been asking for approval to speak at the meeting rather then submit it in writing. It not only allows me more time but I am able to focus on issues being addressed that would allow me to think better. Help joggle my mind on the issues at hand. I do wish you folks would start to treat me like I have a disability and allow me to do what should be done for people with disabilities. Would you take away the ramps for people in wheel chairs? It's about the same for me. I need to speak rather then write. It will only get worse for me unfortunately. Your actions are shutting me out of society.


M. Janicki  |  01-19-2016

I and Dr. S. Keller are the co-chairs of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG), a group formed in 2010 with a mission to advocate for people with intellectual disability and their family and other caregivers when an adult with intellectual disability is affected by dementia (http://www.aadmd.org/ntg). The NTG is an affiliate of the American Academy of Developmental Medicine and Dentistry and is associated with the RRTC on Developmental Disabilities and Health at the University of Illinois at Chicago.

The issue we wish to raise today concerns the education of caregivers. It is estimated that some 95% of adults with intellectual disability reside in the community on their own, with friends, or with family. When beginning to show signs of cognitive decline, the onus of helping them cope with daily activities most often falls on their friends, housemates, or family -- directly or indirectly. We also recognize that Down syndrome, a condition affecting over 10% of adults with intellectual disability, presents with a high risk for Alzheimer's disease and typically the functional changes associated with dementia manifest when adults with Down syndrome are in their early fifties (a form of early-onset dementia). We also know that many housemates or caregivers are often unaware of the symptoms of dementia and are unaware of the best means of helping someone with whom they live with or who is in their care when dementia is present.

A similar challenge vexes provider agency personnel and administrators. We have found that many staff and other workers at intellectual disability provider agencies find themselves in the same situation -- often unaware of early symptoms and untrained in how to use best-practice care models. Further, with increasing life expectancy among adults with intellectual disability, including adults with Down and other at-risk conditions, many more adults are experiencing -- and will continue to experience -- aging-related challenges, including functional and cognitive decline and potentially various dementias. The progressive loss of daily personal care skills, and the accompanying increase in "challenging behaviors" associated with dementia can lead to tremendous frustration, angst, and dysfunction amongst staff involved in the care and support of individuals with dementia.

To address these challenges, the NTG developed a national multi-module education curriculum on intellectual disability and dementia that was first field-tested and rolled out in 2014. Since then, the NTG has made available a model two-day workshop, making use of the curriculum, designed for staff of aging, health, and disability agencies, as well as family caregivers, across the US. In the past two years, our NTG colleagues have conducted some 20 workshops exposing over 800 workers, administrators, and caregivers to the information covered in the workshops. The NTG is also working closely with the Health Resources Services Administration (HRSA) and its effort to create a national unified dementia training curriculum usable for enhancing the skills of the community workforce. This effort is designed to provide quality and experienced care and supports to persons affected by dementia and enhance the capabilities of their family caregivers to continue to provide home-based care. We have also liaised closely with the Administration on Community Living (ACL) with respect to this issue.

However, over the past couple of years, although expanding our capacity to provide training and education, we have found that the number of workers and home-based caregivers needing training continues to exceed our capacity -- as we are an unfunded and volunteer-based organization. Given the great need for expanded outreach and training, we were very pleased to see the introduction of HR.3090 and S.3113 which are the House and Senate versions of the 'Alzheimer's Caregiver Support Act' (and which would amend the Public Health Act). We are in support of this legislation; however, in reading over the language of the bills we find that both are remiss in any specific mention of the needs of caregivers of people with intellectual disability, including Down syndrome. This omission of a segment of the population recognized within the National Plan to Address Alzheimer's Disease as a 'special population' means that it may not receive due consideration if and when the legislation may be implemented.

Thus, we are asking the sponsors to consider amending their bills to include specific mention, so as to ensure that due consideration also will be given to and resources allocated for -- under the Act -- to intellectual disability. Specifically, we are recommending amending the language as follows: (1) Recognizing the needs of caregivers of persons with dementia who also have an intellectual disability; (2) Inclusion of 'intellectual disability' consistent with the definition in the Developmental Disabilities Assistance and Bill of Rights Act (PL 106-402); (3) Inclusion of 'disability organizations' under Section 330M, subsection (c) RECIPIENTS OF GRANTS; and (4) Inclusion of language under Section 330M, Subsection (e) COORDINATION, to include the fact that persons with intellectual disability are also a 'medically underserved' population.

We would hope that the Advisory Council, consistent with provisions in the National Plan to Address Alzheimer's Disease, will offer its support to this legislation -- and also support our 'ask' that consideration of the needs of caregivers of people with Down syndrome and other intellectual disability be added to the bill language.

The NTG's mission and goals -- that of enhancing the lives of adults with intellectual disability affected by dementia and integrating this segment of the US population into both the generic and specialized services and supports available to other adults affected by the dementia -- are in sync with the purpose of this legislation. Our focus has always been on advocating for greater supports for caregivers, including providing information that will enable them to cope, adapt, and continue to provide home-based care for as long as they are capable -- as well as advocating for their interests within the greater Alzheimer's community and among various national non-governmental organizations and state and federal agencies. We see this legislation as a vehicle to enhance the knowledge and capabilities of caregivers, as well as contributing significantly to their -- and their relatives or friends with intellectual disability -- quality of life when affected by dementia.


M. Hogan  |  07-27-2016

Thank you for the opportunity to address the Council today. Some of you may remember me as a regular attendee from the past, most especially during the period leading up to the release of the first National Plan. I return today as a Family Advocate for individuals with intellectual disabilities (ID) and their families and as a member of the NTG, a grass roots organization designed to increase the awareness of and services for those with ID who face the challenges of aging and dementia related decline.

Last July I had the privilege of addressing the Advisory Council as several of the Non-governmental members were ending their NAPA Advisory Council Terms. Many of those original members became champions of the cause of Down syndrome (DS) and Alzheimer's disease (AD). To them I am eternally grateful. It is a privilege to be back again today and to meet those of you who have more recently joined the Advisory Council.

In the past I came before this body to advocate for the inclusion of individuals with ID, most specifically those with DS as a special population to be specifically noted in the National Plan. I also frequently addressed the need for added research dollars dedicated to DS and AD. My passion for this issue is driven by the fact that my brother Bill, a.k.a. Harrison Ford, had DS and died in 2010 of complications of AD. He was 49 years old. Bill touched many lives and his early departure left a significant void. He was a compassionate man with a huge heart. He helped give meaning to life and continues to be sorely missed.

At the time of Bill's death we donated his brain to a research institution in hopes of making a contribution to the cure. It felt important to do so.

I am here today to express my gratitude to the NIH/NIA/NICHD for funding a $35 million dollar grant to address AD biomarkers in individuals with DS. This research will commence in the next month or so at several institutions across the US. Hopefully the outcome will result in improved early intervention and treatment for those with DS and for the general population as well. It is also my hope that this research will bring us closer to the goal of one day ending this devastating disease. I am most grateful to the NIH/NIA/NICHD for funding this initiative with this very special, often underserved, population.

I also wish to acknowledge the progress that has been made at the Administration for Community Living. They have awarded a limited numbers of grants that have promoted training and education in targeted sectors of the ID community. However, the need for information, training and support far exceeds what has been done to date.

Following the release of the First National Plan, during subsequent Advisory Council meetings, I spoke often of the desperate need of aging lifetime caregivers, often in their 80's, who were now supporting a family member with a dual diagnosis of ID/DS and AD. In some cases I noted to you that there have been diagnoses across two generations, a parent and their adult offspring with an ID/DS, an overwhelming burden of care for any family to maintain.

I am here today because:

  • There are still families who are unaware of the relationship between DS and AD.
  • There are individuals with ID and families who have limited options as AD progresses. They often ask:
    • How will they support their family member?
    • Will they be able to remain at home, often with aging parents, sometimes with a similar diagnosis?
    • Will they be able to "Age in Place" in their Group Home?
    • How will they move to be near family when funding is not always available with a change of locations?
    • How will they access a trained cohort of compassionate service providers who value them as people with a life story and a place in their community, providers who view them as more than just "a job"?
    • How do we give individuals with ID/DS a voice when they are often unable to self-report?
    • How do we make sure that they are not overmedicated or undertreated, that their physical, mental, social, emotional and spiritual needs are met?
    • How do make sure that their behavior is viewed as communication and an expression of an unmet need just like the general population.
    • Who will support these aging caregivers?
  • I am here for all of those individuals I have met since 2010 to make sure that they are not forgotten

Today I am joined in spirit by the NTG and many families as I appeal to you to further include this special population in all aspects of expanded outreach, care planning, training and supports. I am here to ask that people with ID and DS be noted in the pending legislation, the "Alzheimer's Caregiver Support Act" and subsequent amendment of the "Public Health Act". The plight of individuals with ID/DS and families is real...the need continues to be great. Families who have been lifetime caregivers often feel abandoned. They have worked hard to independently provide care in the past. They now need extensive support that they struggle to or are unable to access.

I urge you to leave here today, more than 5 years after NAPA was signed and implemented, with a renewed awareness of and commitment to the critical needs that remain in existence today for this underserved group of people and their families. Thank you for your willingness to listen, to reflect and act on their behalf.


T. Buckley  |  07-27-2016

Mr. Mueller, at 90 years of age donated this home to Lucanus to open a 4 bed advanced dementia home. Mr. Mueller died of Alzheimer's and pleaded with Lucanus to enable his son with Down syndrome an d Alzheimer's disease to remain in the home and 3 other families.

Family centered is the process of empowering the family and person served to make an informed choice for their future and have the confidence and unwavering support from Lucanus and Erin to make their dream a reality.

It is interesting to note due to age of caregivers:

1) Gary was not walking when he came to Lucanus because Mr. Mueller at 90 never exercised and it was easier if David was in a wheelchair. The support coordinator stated he was in a wheelchair and could not walk.

The Lucanus founder T. Buckley sr. founded Lucanus over 42 years ago, He asked Mr. Mueller who replied he will walk he just can't risk trying to support Gary when he can barely support himself

This is Gary in only 12 days he went from the wheelchair and walker to walking independently. His mood and self-worth changed immediately and from helplessness he walked all day every day because he was so happy to walk again.

This is David and Stephanie with my Sister Judy. They have both been at Lucanus for 35 years. We presented to the Florida Memory Disorder Center's at the Mayo Clinic. Thanks to your tremendous support all these incredible Hospitals have changed the lives for those we serve.

Stephanie just competed in the Florida Cheerleading competition and showed the second place. Ribbon.

At Lucanus, we did not get up to live everyday only to hope to die a good death. We focus on great ties together ad new memories to cherish.

Just two weeks ago Stephanie threw her diary away because she forgot to write in for three days. My sister found her diary in the trash and now they sit together every day and write her memories.

Some may say persons with down syndrome are not worth prolonging the life for the individual but if you're with Stephanie or her Mom, she not only adores her Mom and vice versa, but she writes the memories from her wonderful life.

These are our dementia care coordinators and David never leaves their side.

This is our new Health Home. The Tringo Family own this home and with Mr. Tringo's incredible IT background we have 16 cameras to prevent wandering, monitor 90% with seizures, and falls. We also have a dementia puppy chocolate lab. The Lucanus Center own our other 5 homes but the family are so worried about what will happen to their adult children that are taking the lead and fully partnering.

I have personally created 31 homes all specialized over my career. This is the first time the families felt incredibly empowered from Erin Long and so much so they went and told all the neighbors about their Son needing this home as a group home and living in the neighborhood 35 years.

The neighbor has a Son with Down syndrome but the Tringo were unaware. What an incredible difference it makes when the family speak the community and neighbors for their child rather than an organization.

My Son Andrew as Dementia Care Coordinator showing 89-year-old Mom how to use life. Mom fell 6 times lifting daughter.

David told his parents and all of us in the caregiver group he is not getting in the Hoyer lift the "Boys" will pick him up. David laughed for 30 minutes and said he is so glad to have brothers.

The Dementia journey is a reflection of your commitment, attitude and expression to your loved one. We serve 80 persons every day and have the greatest time because we all refuse to focus on a good death and we enjoy the days we are together and alive.

I attached a training curriculum we use for the Lucanus health Home to teach the Nova doctors, our Health Care guidelines for ID, and several forms in case your asked by a member of your community.

Thank you very much for appointing Erin and providing travel for her to Chicago--she was exceptional.

Take care, Tom

ATTACHMENT #1:

What is a health home?

A state Medicaid program defined in an SPA that is responsible for comprehensive care management; care coordination and health promotion; comprehensive transitional care/follow-up; patient and family support; referral to community and social support services; and use of health information technology (HIT) to link services. A Health Home program may be made up of several Health Home providers.

Health Home Provider: An individual provider, team of health care professionals, or health team that provides the Health Home services and meets established standards. States can adopt a mix of these three types of providers identified in the legislation:

  • Designated provider: May be physician, clinical/group practice, rural health clinic, community health center, community mental health center, home health agency, pediatrician, OB/GYN, other.
  • Team of health professionals: May include physician, nurse care coordinator, nutritionist, social worker, behavioral health professional, and can be free standing, virtual, hospital- based, community mental health centers, or other.
  • Health team: Must include medical specialists, nurses, pharmacists, nutritionists, dieticians, social workers, behavioral healthcare providers, chiropractors, licensed complementary and alternative medical practitioners, and physician assistants. Health Home Enrollee. Medicaid beneficiary (adult or child) enrolled in a state Health Home program. Medicaid beneficiaries eligible for Health Home services:
    • Have two or more chronic conditions, or
    • Have one chronic condition and are at risk for a second, or
    • Have a serious and persistent mental health condition.?Health Home enrollees may include beneficiaries dually eligible for both Medicare and Medicaid.

Primary Care Provider. Physician or nonphysician (e.g., nurse practitioner, physician assistant) who offers primary care medical services. Licensed practical nurses and registered nurses (RN) are not considered primary care providers.

Mental Health Practitioner. A practitioner who provides mental health services and meets any of the following criteria:

  • An MD or doctor of osteopathy (DO) who is certified as a psychiatrist or child psychiatrist by the American Medical Specialties Board of Psychiatry and Neurology or by the American Osteopathic Board of Neurology and Psychiatry; or, if not certified, who successfully completed an accredited program of graduate medical or osteopathic education in psychiatry or child psychiatry and is licensed to practice patient care psychiatry or child psychiatry, if required by the state of practice.
  • An individual who is licensed as a psychologist in his/her state of practice.
  • An individual who is certified in clinical social work by the American Board of Examiners; who is listed on the National Association of Social Worker's Clinical Register; or who has a master's degree in social work and is licensed or certified to practice as a social worker, if required by the state of practice.
  • An RN who is certified by the American Nurses Credentialing Center (a subsidiary of the American Nurses Association) as a psychiatric nurse or mental health clinical nurse specialist, or who has a master's degree in nursing with a specialization in psychiatric/mental health and two years of supervised clinical experience and is licensed to practice as a psychiatric or mental health nurse, if required by the state of practice.
  • An individual (normally with a master's or a doctoral degree in marital and family therapy and at least two years of supervised clinical experience) who is practicing as a marital and family therapist and is a licensed or certified counselor by the state of practice, or if licensure or certification is not required by the state of practice, who is eligible for clinical membership in the American Association for Marriage and Family Therapy.
  • An individual (normally with a master's or doctoral degree in counseling and at least two years of supervised clinical experience) who is practicing as a professional counselor and who is licensed or certified to do so by the state of practice, or if licensure or certification is not required by the state of practice, is a National Certified Counselor with a Specialty Certification in Clinical Mental Health Counseling from the National Board for Certified Counselors (NBCC).
Lucanus Health home measures
Measure Description Result Signature from staff
BMI Nurse practitioners will monitor and maintain a healthy BMI    
Controlling behaviors/dementia symptoms Engaging clients in meaningful activities & modifying the home    
Fall prevention screening Video cameras displayed all throughout the home will monitor & record up to 30 days    
Palliative care Nurses & in-home staff will provide palliative care    
Telemedicine Doctors from the university from Nova will administer all medications    

ATTACHMENT #2:

DRAFT of Chapter on Intellectual and Developmental Disability [Available as a separate link: https://aspe.hhs.gov/pdf-report/napa-public-comment-attachment-draft-chapter-intellectual-and-developmental-disability]

ATTACHMENT #3:

Primary Care of Adults with Developmental Disabilities, Canadian Family Physician (2011, 57:541-53) article [Available as a separate link: https://aspe.hhs.gov/pdf-report/napa-public-comment-attachment-primary-care-adults-developmental-disabilities]

ATTACHMENT #4:

Family Medicine Curriculum Resource: Adults with Developmental Disabilities [Available as a separate link: https://aspe.hhs.gov/pdf-report/napa-public-comment-attachment-family-medicine-curriculum-resource]


G. Bayless  |  07-13-2016

We've organized a clinical study to see if our composition might be the much sought after solution to this devastating condition. How might we qualify for funding for this project? I have references that would convince you of our qualifications.


V. Rinker  |  07-07-2016

Where is the July 2015 HHS document titled: Alzheimer's and Related Dementias: HIPAA Resource List? I'd like a copy and to know where it accessible on an HHS website.


MAY 2016 COMMENTS

M. Ellenbogen  |  05-24-2016

Maybe the NAPA committee can learn from this. Our Canadians friends who just started to focus on dementia seem to learn very quickly on how to accommodate those with dementia. Just maybe you can learn from it.

http://mindsetmemory.com/the-canadian-senate/


APRIL 2016 COMMENTS

M. Sharp  |  04-20-2016

Hello. I am Program Manager for The Association for Frontotemporal Degeneration (AFTD). Thank you once again for the opportunity to comment on behalf of our 'related dementia" FTD. I was lucky to be at the 2016 Alzheimer's Disease-Related Dementia Summit in Bethesda last month and haven't stopped thinking about everything that happened during the two-day event.

AFTD Director S. Dickinson was honored to co-chair a new session on Non-Governmental Organizations and we are grateful for the opportunity to help develop recommendations on how NGO's can facilitate and promote bio-medical research and build stronger partnerships between the academic researchers working on the "related-dementias", the federal institutes providing the funding.

One of the more surprising things I heard at the summit was that most people who are diagnosed will have a mix of different pathological changes in their brain and it is usually possible to find signs of multiple diseases when looked for by autopsy. So even though people are diagnosed as having a single disease, dementia is actually much more complicated and messy and until biomarkers are found for all the pathologies associated with dementia researchers need to acknowledge that the names we currently use for diagnoses don't accurately reflect the complex biology of these diseases.

Along those same lines, we are very much looking forward to the work of dementia nomenclature working group as recommended at the 2016 summit. The task of developing a coherent and consistent nomenclature and clarifying the language used by all stakeholders involved with dementia in all its medical, social and cultural complexity is daunting to say the least but AFTD is eager to help however we can.

The progress being made in research on the related dementias, and especially FTD, is truly exciting. The 2016 ADRD summit made it clear that this research is necessary to treat, cure and ultimately prevent not only the related dementias, but Alzheimer's disease as well.


E. Sokol  |  04-20-2016

  • Later this afternoon the NAPA Advisory Board will be hearing about a proposal to hold a research summit on care and services.

  • AFA supports the idea of a caregiver summit and, to be truly successful, the Department of Health and Human Services needs to fully participate and engage in the planning and execution of such an event.

  • Innovative caregiver models that incorporate specialized dementia training and supports have the potential to save resources by lower hospital admissions, re-hospitalizations and emergency room visits as well as delaying placement in more costly institutional settings.

  • For example, empowering caregivers to conduct environmental assessments will lower incidences of falls. Prescription adherence techniques will ensure better management of comorbidities; caregiver training can also help diffuse confusion or agitation in a person with dementia.

  • In addition to better outcomes, there are opportunities for cost savings. An independent study of a Minnesota dementia caregiver program that provided training and support found that, if fully implemented, the program would save the state nearly $1 billion over 15 years.

  • As demonstrated in Minnesota, small investments in supports that provide caregiver tools and strategies yields major savings and better outcomes.

  • In addition, the Senate Finance Committee has convened a Bipartisan Chronic Care Working Group which is looking at proposals that seek to increase care efficiencies, provide better health outcomes and lower overall care costs for Medicare beneficiaries with chronic conditions including people living with dementia.

  • Given this uptick in interest, now is the time to hold a caregiver summit that can examine such person-centered models to see what works, how innovative models can be scalable and identify where there are policy gaps.

  • Such a caregiver summit can provide valuable information to jumpstart a legislative effort to adopt such caregiving models that promote efficiencies, saves resources and keeps persons receiving care in the home longer.

  • Thank you for your time and the opportunity to offer comments.


M. Janicki  |  04-20-2016

Along with my colleague, we are the co-chairs of the National Task Group. Our Group's goal is to work with the Advisory Council and the National Plan to Address Alzheimer's Disease to promote the inclusion of the concerns and needs of adults with intellectual disabilities affected by dementia, as well as their families and caregivers. We have been in place since the passage of the National Alzheimer's Project Act and the inception of the Council. Today, on behalf of our Group, I would like to inform the Council of what our Group has been doing to aid in carrying out aspects of the National Plan on behalf of people with intellectual disability.

  1. The 2014 HCBS Rule

    Some of you may be familiar with the January 2014 issuance of the Centers for Medicare and Medicaid Services (CMS) new Home and Community-based Services (HCBS) rules which established guidelines for services and supports that may be financed through several Medicaid long-term supports and services programs (Final Regulation CMS-2249-C/CMS-2296-F) -- sometimes referred to as the "HCBS Settings Rule".i According to the rule, federal financial participation is enabled if home and community based services are provided in settings that focus on the needs of persons with intellectual disability as noted in their person-centered support plan. There are a number of requirements on services to ensure that they comply with community inclusion (including being integrated and providing support for full access to the greater community; being selected by the individual from among options including non-disability specific settings; ensuring the individual's rights to privacy, dignity, and respect; optimizing individual initiative, autonomy, and independence in making life choices, and facilitating individual choice regarding who provides the service). There are also some conditions related to settings when owned or controlled by a provider. According to the rule, the onus is on each state plan authority to show that it is in compliance and to submit a transition plan demonstrating how compliance will be brought about.

    The NTG lauds the efforts of CMS to create a vehicle for system change and provide protections for individuals with disabilities so as to maximize personal choice, decision-making and community inclusion. However, with respect to older persons with intellectual disability affected by dementia, we find that the rules are silent with respect to optimizing community supports. In the developmental disabilities system in the US, much is being made of trying to preclude (re)institutionalization of adults with intellectual disability when affected by dementia. We have been informed by many providers that as the CMS rules are silent on the application to persons with dementia, they are worried that states may not make reasoned judgements that maximize community living among adults with dementia in fear of not being compliant with the rules. We have been informed that informal counsel from CMS is that the main vehicle for compliance with respect to dementia is through the artful application of each individual's person-centered support plan.ii While we support this approach, there is a need to ensure relative uniformity and offer relief from having each provider individually engage their state plan entity in negotiating this process.

    We would like to propose that the NTG and other interested parties sit with CMS and collectively develop an interpretive letter or fact sheet for state plan entities for the application of the rules to situations of community housing for people with intellectual disability affected by dementia and would ask the Council to join us in supporting this resolution.

  2. Workforce Enhancement Efforts

    The NTG has used its specially developed educational curriculum on dementia and intellectual disability (specifics available at http://aadmd.org/ntg/education-and-training)--consistent with the National Plan's Strategy 2.A: Build a Workforce with the Skills to Provide High-Quality Care.iii Since 2014, we have run a series of two-day workshops across the United States ("Dementia Capable Care of Adults with Intellectual Disabilities and Dementia"), including in most cases a third day 'train-the-trainer' component.iv To date approximately 570 workers at various levels have attended the intensive two-day trainings, along with another approximate 800 who have attended our one-day NTG capacity building workshops on dementia and intellectual disabilities. Our 18 module NTG Education and Training Curriculum on Dementia and Intellectual and Developmental Disabilities is available for use by trainers who have completed the train-the-trainer program as well as those who are part of HRSA's Geriatric Workforce Enhancement Programs. At this point we are scheduling one to two two-day workshops per month. In addition, drawing upon the curriculum and other materials produced by the NTG, we are collaborating with the National Down Syndrome Society and the Alzheimer's Association to produce an informational and educational booklet on dementia and Down syndrome usable by family and other non-paid caregivers. We expect this booklet to be available in early 2017.

  3. Collaboration with ACL's Alzheimer Disease Initiative Grantees

    The NTG has had contact with a number of the Administration on Community Living's ADI grantees that have included efforts to aid adults with intellectual disabilities affected by dementia and their caregivers. We have organized or are organizing targeted workshops and other trainings for a number of the 41 grantees, for example, projects in Rhode Island, California, Hawaii, and Florida. We are also working with grantees to aid them in using the NTG-EDSD--the NTG's early detection and screening instrument specifically developed for use with persons with intellectual disability. The instrument is being (or will be) used to help with screening referrals for the grantee's services, to record demographic and clinical information to help with channeling supports and services, and to help with tracking changes in function and health. The NTG-EDSD has been adopted for nationwide use in Scotland and has been translated into a number of languages for use in the US and overseas. We commend the ACL for incorporating the needs of persons with intellectual disability within the Alzheimer Disease Initiative grant program and look forward to being of assistance to these and other grantees over the course of the National Plan.

  4. Research Summit on Care and Services

    The NTG would like to have the Council know that it fully supports the holding on the Research Summit on Care and Services. We recognized that national statistics document that a significant number of adults with intellectual and developmental disabilities (I/DD) continue to remain at home residing with family, whether parents, siblings or other kin.v Others live in family situations with non-relatives who are surrogate caregivers.vi As there is a body of research on the nature of extended, often life-long caregiving among these caregivers, as well as the different challenges and adaptations experienced by lifelong caregivers when contrasted to late-life caregivers, the nature of adaptations to caregiving when adults with I/DD begin to experience dementia, and the progression through the course of Alzheimer's disease or related dementias, it is our position that the inclusion of issues related to intellectual disability should be included within the Research Summit.vii

    We envision that contributing to this area of inquiry and the resultant recommendations relative to the institution of federal and state-based policies and funding schemes to aid this category of caregivers, contributing to practice guidelines for agencies responsible for supporting aging caregivers and caregivers of older adults with I/DD affected by dementia, and translating viable practices from caregivers of adults with I/DD to general caregivers and vice versa--would be of assistance to the Council as it formulates is successive iterations of the National Plan.

  5. Summit on Dementia and Intellectual Disability

    We would like the Council to know that there are still a number of outstanding and unresolved issues related to dementia and people with intellectual disability that warrant an international dialogue to correspond with the 'Glasgow Declaration' which addresses 'dignity and autonomy in dementia".viii Thus, the NTG, along with the Rehabilitation Research and Training Center on Developmental Disabilities and Health at the University of Illinois at Chicago, has been in consultation with colleagues at the University of the West of Scotland (UWS) and Alzheimer Scotland to organize an 'international summit' on intellectual disability and dementia to be held October 13-14, 2016 in Glasgow, Scotland. The summit will be geared to developing a major international policy statement on a number of areas related to dementia and adults with intellectual disability, including (a) human rights and the Convention on the Rights of Persons with Disabilities (CRPD), (b) nomenclature, (c) advanced dementia and end-of-life care practices, (d) family caregiver supports, (e) community dementia capable care practices, and (f) advocacy for inclusion of persons with intellectual disability in national Alzheimer's disease plans.ix We anticipate a number of international delegates attending from Europe and North America and expect that the summative document produced will be of help to the World Health Organization, Alzheimer Disease International, Alzheimer Europe, national Alzheimer societies and related entities, as well as developmental disability providers, in Europe and North America, various governmental entities, and national advocacy and plan bodies such as the Advisory Council.

    As this 'summit' will have many applications, we cordially extend an invitation to any Council member who would wish to attend.

NOTES:

i. Larson, S.A., Hallas-Muchow, L., Aiken, F., Taylor, B., Pettingell, S., Hewitt, A., Sowers, M., & Fay, M.L. (2016). In-Home and Residential Long-Term Supports and Services for Persons with Intellectual or Developmental Disabilities: Status and Trends through 2013. Minneapolis, MN: University of Minnesota, Research and Training Center on Community Living.

ii. Nocon, M. (2016). Addressing the need to accommodate delayed egress via IPPs. Spring Valley, CA: Noah Homes.

iii. US DHHS. (2014). National Plan to Address Alzheimer's Disease: 2014 Update. Washington, DC: Author

iv. http://aadmd.org/ntg/education-and-training

v. Larson et al. Ibid.

vi. Jokinen, J. Janicki, M.P., Keller, S.M., McCallion, P., Force, L.T. and the National Task Group on Intellectual Disabilities and Dementia Practices. (2013). Guidelines for structuring community care and supports for people with intellectual disabilities affected by dementia. Journal of Policy and Practice in Intellectual Disabilities, 10(1), 1-28.

vii. National Task Group on Intellectual Disabilities and Dementia Practice. (2012). 'My Thinker's Not Working': A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports. http://www.aadmd.org/ntg/thinker

viii. http://www.alzscot.org/campaigning/international_activity (Glasgow Declaration)

ix. National Task Group on Intellectual Disabilities and Dementia Practices. Ibid.


M. Ellenbogen  |  04-15-2016

I serve on many boards. Unfortunately, though, I miss a lot of what is being said when people are speaking. It's hard to admit, but that is the truth. I have spoken to others who have dementia and they tell me the same story. Because of that reason alone, I believe it is unjust to have only one person living with the disease on any board. It not only puts them in an unfair position but it will surely contribute to not getting the proper feedback, which, I assume, is why you ask us to serve on the committee in the first place. While I have recommended this before, I strongly recommend you add at least another person living with dementia to the council. After all, you have two representatives for caregivers, although I am not sure why you would think they need a larger presence than those you are trying to help. They did hear my request at the World Dementia Council. And if you are looking to follow the best model, just look at Dementia Action Alliance, they have 9 diverse individuals living with dementia. Since I believe you are supposed to be the leader in this mission shouldn't you start by setting the right example for others to follow.

On another note, and sounding like a broken record, it would sure be great if I could speak on the phone or internet. Instead, I need to work countless hours with the help of others, to create my comments as my spelling is no longer readable. So you can fix the track before the next meeting.


P. Shenian  |  04-13-2016

I am a Board member of The Association of Frontotemporal Degeneration (AFTD), based in Radnor, Pennsylvania.

FTD is early form dementia affecting language behavior and speech

I am proud to announce annual caregiver conference and board meeting will be held in Minneapolis in May

Our keynote speakers will be B. Bove and D. Knopman, who are R. Peterson's associates

My family is fully vested with AFTD. My dad had ftd, and my mom was a founding board member

I was also a caregiver

I was fortunate to be close friends with the late Senator Specter who helped me early on with my advocacy work in Washington.

I am here today to advocate on behalf of AFTD but I speak on behalf of all families battling AA and related dementias.

There is power in numbers and I am optimistic with the help of the Council and HHS that we will find treatments and get to a cure

Thanks to the council for all your hard work.


FEBRUARY 2016 COMMENTS

A. Jaiman  |  02-22-2016

I have the following information on last year: "Specific to funding for Alzheimer's research, in his Fiscal Year (FY) 2016 budget request, President Obama requested $638 million to combat Alzheimer's disease across the National Institutes of Health (NIH). This is an increase of $51 million the FY 2015 funding level."

Do you have similar information on FY16.


L. Jordet  |  02-18-2016

I have a question that I couldn't find on your website. We are slowly losing my mother to dementia. We are wondering if there are any programs that we could donate her brain when she passes to help in the research of this terrible disease. We are located in Minnesota.

Is this something that you could help us with?

ANSWER:

You should contact your local Alzheimer's Association chapter. They could tell you who in your state is currently doing that type of research.


A. Martinez  |  02-08-2016

Greetings from Killeen, Texas! I work as a Graduate Assistant in the Office of Research at Texas A&M University-Central Texas. One of our research projects here at the university is about cognitive care. I respectfully request a copy of the National Alzheimer's Project Act (NAPA) of 2011. Would it be possible to obtain the NAPA in a PDF version so I could cite the document properly? If the NAPA is downloadable online, could you please direct me to the website so that I could manually download the document?

ANSWER:

A copy of the Act is available on the NAPA website under Preliminary and General Information documents at https://aspe.hhs.gov/preliminary-and-general-information.


JANUARY 2016 COMMENTS

W. Mansbach  |  01-21-2016

I am the CEO & Founder of Mansbach Health Tools, LLC and the CEO & President of CounterPoint Health Services. I am honored to sit on the Maryland Governor's Alzheimer's Disease Council.

I have been watching the progress of the NAPA Advisory Council with great interest. There are two facets that I find particularly important in meeting the needs of people with dementia and their caregivers.

The first facet is the importance of early identification of dementia. We are able to identify people as early as during the Mild Cognitive Impairment (MCI) stage and differentiate among the different subtypes of MCI. Ideally, people with cognitive impairment would receive an early diagnosis which then would allow them and their families to create realistic plans and expectations for their future care needs.

The second facet is the expansion of supports for people with Alzheimer's Disease and their families (Goal 3 of the National Plan). Strategy 3.B of the National Plan (Enabling Family Caregivers to Continue to Provide Care while Maintaining Their Own Health and Well-Being) is vitally important. To that end, my team and I have developed a program, which uses the acronym ANTHEM, to teach caregivers how to care for themselves and protect/improve their own health, including their somatic, cognitive, and emotional well-being.

We also recognize that at some point, the emphasis for people with dementia shifts from cognition to meaningful engagement -- maintaining the dignity, safety, and rights of people with Alzheimer's Disease (Strategy 3.D). Meaningful engagement also is beneficial for the caregivers and promotes positive interaction between the person with dementia and the caregiver.

I encourage the NAPA Advisory Council to expand their work with public and private sector partners to create a clear path from early identification through supporting those who have dementia and their caregivers -- until we find a cure.

I would be happy to provide additional information and resources.


M. Ellenbogen  |  01-21-2016

A few years ago I had share my Dementia Friendly Vision and you added it to the public comments. This is an updated version. Can you please do that again? I can also send it as a word document if you need that. It has been seen by so many world leaders and others actually were driven to start something. Even as far as other parts of the world.

Thanks so much for your help.

ATTACHMENT:

Dementia-Friendly Vision Expanded for State and National Implementation

By M. Ellenbogen
January 2016

PREFACE

As a person living with younger-onset Alzheimer's disease I find it a challenge these days to be able to share all my thoughts with groups of people. While I appear to be very normal when we have short talks, there are many issues that I struggle with. I have lost the sharpness and quick response needed to be able to interact with you all at your level. .While I may not respond immediately, answers come to me many hours later. Sometimes they never do. When I hear conversations I do not hear the entire sentence but part of it, and in my mind I fill in the blanks. It's weird to know I have many answers in my head, but cannot find a way to retrieve them.

Because of all this, I want to ensure I have the opportunity to share my vision of what I would like to see happen in the U.S. and globally. Some of these ideas come from others who have created them before me, while many are my own or a combination of both.

The original document from 2013 has already been shared with many world leaders. This is a current, updated version that includes some new material. I did have assistance in the editing of this compilation, which I hope you will use to advance my dementia-friendly vision wherever you live.

AWARENESS, EDUCATION & CONSOLIDATION

AWARENESS & EDUCATION

For those of us living with younger-onset Alzheimer's disease (YOAD), the public's lack of awareness and understanding is a huge barrier to our ability to sustain full and meaningful lives. Awareness of YOAD is needed to change public perception of who gets Alzheimer's and other dementias. Young people who are under 30 can get it. I know of a 29 year old and a 30 year old who have it. Our country must use commercials, billboards and posters in key places to make the public understand that not everyone living with dementia is in their 70s or 80s. The faces representing the disease must change! We must show younger people in a multi-media campaign so the public learns that Alzheimer's is a disease that affects all ages; it is not just associated with getting older.

Similarly, the public's lack of awareness and understanding about Alzheimer's disease and other dementias must change. Alzheimer's is often used for any form of dementia. While Alzheimer's represents approximately half of the types of dementia, there are other forms of dementia as well. An estimated 1.4 million of the over 5.2 million Americans living with dementia have Lewy Body dementia (Lewy Body Dementia Association, 2015). Other common forms of dementia include vascular and fronto-temporal dementia. The Dementia Action Alliance recommends the term 'dementia' as the appropriate inclusive term.

Currently people who have Alzheimer's and other dementias cannot be cured. There is no way to slow the progression of the disease, and most die within 4 to 8 years of diagnosis. While these two statements are strong I feel this is what it's going to take to reach younger generations and others to jump in and help. We cannot beat around the bush; the public needs to know that this is a horrific way to die. Death is slow and painful, not to mention the impact it has on the family. Organizations like the Alzheimer's Association and others need to provide information about all aspects of this disease so people can be better prepared if or when they or a loved one is diagnosed with dementia.

REMOVING THE STIGMA

We must remove the negative stigma associated with the disease. Too many people are ashamed to let others know that they have this disease. They act like they did something wrong to get it. Now is the time to join me, come out of the closet, hold your head up and be proud in making a difference in how we are looked upon by others and ourselves. We need to show that we are still capable of doing many things at our own pace. We must be able to live life to the fullest even though we have the diagnosis.

CONSOLIDATING IDEAS FROM AROUND THE GLOBE

Most of the people I speak to at high level do not know what Dementia Friendly Communities (DFCs) mean. They act like they know until I put them on the spot to explain. Not many will do that, but I need to know people understand; they need some kind of a blueprint to help guide them to start the process.

I will start out by saying I do not believe anyone out there has it right yet and it will probably also continue to evolve over time. What they all lack is to see what is needed it because we focus on it from a silo point of view and are not willing to place the demands on what are truly needed. We tip toe around it with many of our requirements so that others buy in. While they are doing great things in Japan and the UK I am still not sure someone has clearly written the definitions of what it all means and all who are involved.

A lot of what Act is doing in the US is copied from those programs. I also believe it is not getting the same level of involvement as the UK but it is certainly a great start. Olivia M. needs to be careful on how hard they push and ask. The Act model has now been kicked off in the US as Dementia Friendly America. I think we should have high level standards and allow people to choose what level they are willing to support. We should start off by combining the best of programs used by world leaders.

What I believe we need to do is to create a new temporary group. That group should only consist of the people from around the world who created their own DFCs. One complete manual should be created by including every single idea that they all came up with into one manual. Have a separate section for why they changed direction and what had failed and why there was a need for change in direction or modification to their programs. What are the ideas they would like to see added since their implementation that never made it. Even if they do not think it is possible. Once we have this list then we can eliminate duplication. They should all vote on it as the ongoing model. They also need a few people with dementia. I do not mean just bodies but people who really have a good view of what is really happening. I also believe we should create tiers or levels for the various goals created. Maybe 6 levels with the 6th one that we may know will never even happen. But maybe some parts will. That will be our way to measure progress and give other bragging rights and create competition. We can talk further but I believe you know where I am headed with all this. A 1 may be as just a simple awareness to all of the communities to know about dementia. Just knowing. It seems like such a simple task.

In my opinion people like ADI should be behind this and other national groups like AARP. That is the only way we will focus to work together and not create silos. I realize it will need to be done at many local levels but we need to do it with global thinking in mind

For further information about Dementia-friendly Communities:

DEMENTIA-FRIENDLY COMMUNITIES

My vision of a dementia-friendly community is a bit involved, but if it is implemented it will have a huge impact in many ways. When I think of a dementia-friendly community it refers mostly to those who are in the early to mid-stages of the disease. This idea was first started in the UK by my friend Norm McNamara who is living with Lewy Body Dementia.

We need to encourage dementia-friendly communities and businesses in which dementia is treated like any other disability.. This community should include first responders, health providers, service providers, local businesses, public transportation providers, airports, and the public..

UNIVERSAL SYMBOL: THE WORLD PURPLE ANGEL

There is a common logo that is slowly becoming the internationally known symbol for those living with dementia and I think we should use it. It is called the World Purple Angel.

To be used on all websites and dementia patients information and hospitals

For stores and businesses to show they know and have been educated

This was created by N. McNamara and is starting to get a lot of recognition. In fact it is now going to be used in some US hospitals as an indicator that the person has cognitive issues; they hang it on the door of the hospital room of the patient. I recommend that we adopt this symbol for all programs connected to dementia-friendly communities. Many people create their own logo for their own local area. For some reason they all want to be different. I see that as a huge mistake. When people with dementia leave their area they should be able to rely on a symbol that is used everywhere they go. Since many already have a symbol they should also include the World Purple Angel along with their own. This will be the same as for people who rely on a handicap sign. We must do this if we are truly looking to help people living with dementia. While I don't care which symbol is used I think we should not create a new one. The World Purple Angel is already known in all 7 continents. For that reason alone I would say that is why we should focus on using that symbol. Also it was not created by any organization, but people living with dementia.

Each of the following elements should be considered in the creation of dementia-friendly communities:

MEDICALERT & SAFE RETURN SERVICES

Six in 10 people with dementia will wander and/or get lost. A person with Alzheimer's may not remember their name or address, and can become disoriented, even in familiar places. Anyone who has memory problems and is able to walk is at risk for wandering. Even in the early stages of dementia, a person can become disoriented or confused for a period of time. It's important to plan ahead for this type of situation. Wandering and getting lost can happen during any stage of the disease. Be on the lookout for the following warning signs:

  • Returns from a regular walk or drive later than usual
  • Tries to fulfill former obligations, such as going to work
  • Tries or wants to "go home", even when at home
  • Is restless, paces or makes repetitive movements
  • Has difficulty locating familiar places like the bathroom, bedroom or dining room
  • Asks the whereabouts of current or past friends and family
  • Acts as if doing a hobby or chore, but nothing gets done (e.g. moves around pots and dirt without actually planting anything)
  • Appears lost in a new or changed environment

For people with dementia wandering is dangerous, but there are strategies and services to help prevent it. First responders need educating, and a system needs to be created that will help identify us without becoming a target for others. I believe we need a system that allows individuals to register with the state, or someone of equal standing, this should include care partners as well as it's important to have emergency info on the caregiver. I would like to see something similar to MedicAlert at a state level. What follows is a brief outline of the MedicAlert system:

MedicAlert® + Alzheimer's Association Safe Return® is a 24-hour nationwide emergency response service for individuals with Alzheimer's or a related dementia who wander or have a medical emergency. We provide 24-hour assistance, no matter when or where the person is reported missing.

  • If an individual with Alzheimer's or a related dementia wanders and becomes lost, caregivers can call the 24-hour emergency response line (1.800.625.3780) to report it.
  • A community support network will be activated, including local Alzheimer Association chapters and law enforcement agencies. With this service, critical medical information will be provided to emergency responders when needed.
  • If a citizen or emergency personnel finds the person with dementia, they can call the toll-free number listed on person's MedicAlert + Safe Return ID jewelry. MedicAlert + Safe Return will notify the listed contacts, making sure the person is returned home.

The Alzheimer's Association has developed training tools and support programs to prepare law enforcement, EMTs, fire fighters and other first responders when they encounter a person who is wandering.

The information on your medical alert bracelet will connect health professionals with your emergency medical information. We provide memberships and services designed to protect you and your loved ones during a medical emergency or time of need.

MedicAlert's medical bracelets, medical IDs, and other medical jewelry have been used to alert responders of the underlying medical conditions a patient may have -- such as allergies, anaphylaxes, diabetes, and autism. First responders are trained by MedicAlert staff to recognize all forms of medical IDs, and our services ensure they get your up-to-date medical information, the moment they need it, to make informed decisions about your treatment and care. MedicAlert services and medical IDs are also used to communicate advance directives and can even help those with Alzheimer's or dementia make it home safely during wandering emergencies.

For more information please visit their website: http://www.alz.org/care/alzheimers-dementia-safety.asp.

Those who choose to register would wear a bracelet similar to the one above or some type of tag on a chain. By registering the people would be able to take advantage of many benefits. Family would need to register and could be set up when in the clinic for diagnosis as well as info bracelet ordered and resources given out.

All those registered would be given a unique identification number that will have basic information that could be used in case of emergency. To stop the system being abused or compromised, this information should only be accessible by the relevant people, following a secure procedure and calling a special telephone number and providing the person's ID number. (This would only be accessed by calling a provided number)

It may include information like blood type, allergies, last wishes, drug information, doctors, emergency contacts, and addresses,

This system needs to be linked with the 911 systems, and the yellow dot program. When a person calls the fire department the address should be flagged immediately when it comes up as a person with dementia living in the residence they are being dispatched to. This is important for many reasons.

A person with dementia may panic in this situation and may not know how to respond to the emergency conditions. They may be much worse than a child in some cases, and just curl up in a corner in fear and just stay there. They may not even speak out when people are calling their name. They may have even started the fire and are scared. They could be combative and the firefighters need to know how to deal with that situation. There are many other reasons why the firemen need to be aware before arriving.

If we ever have some kind of a natural disaster or need to evacuate for some emergency this system will be a major asset, especially for those who may be at home on their own. By being registered this will 9 insure a much better outcome for those who may not be able to think for themselves. Many of these people would not leave with just a simple call and they may not even understand what is said in robo-call type alerts.

If the police are called that should also be flagged immediately. It could be the person with dementia calling in, and not able to articulate the problem. It could even be a false alarm because they are scared when there is really no threat. Sometimes people with dementia have been known to make serious accusations of being threatened by their spouse with a gun, which has led to spouses being locked up for days because the system was not aware of the person's dementia. Again, if members of the emergency services are coming to a house where a person with dementia resides, they need to treat threats in a completely different way otherwise it can escalate and even become deadly.

Not everyone will easily display, or even be willing to wear the bracelet or tag because of the stigma surrounding this disease. Only when this changes will people feel more comfortable about sharing their diagnosis with others.

Throughout this document I give many examples to where one can wear a product to be identified as a person living with dementia. Keep in mind if we do this right it will only require one if we can all learn to work together and make it a seamless operation. I have no doubts that can work and that is my intent.

ISSUES WITH POLICE: DRIVING & WEAPONS

Driving

Driving laws need to change to remove the licenses of those that are no longer capable, while not impacting those that are still able to drive. It should be based on the person's true driving experience and ability, and not on perceptions or fears. It should have nothing to do with getting lost; GPS tracking devices can help us if that is a concern. Many people have the misconception that if a person with AD is in an accident the insurance company will not pay for the claim, or may even sue them. While there are many tests available to test one's driving, many are not fair to a person living with AD. In fact if the average person was given the same test they may even fail. Better tests that deal the individual living with the disease are needed and all must be able to test this test. Some of the cognitive tests do not correlate to driving ability, but to failing and singling out people with AD. That is completely unfair. For example I fail the Trail-Making Test, Part B and I still drive very good. The testing should be free or paid by insurance. These tests can cost around $300 -$350, and provide annually. Every 2-3 months we should drive with a spouse or other person who understands us to see how well we drive. That should be a regular part of our future lives, and they should be the ones to tell us when they feel it is time to give up driving. I am not saying that people with AD should not eventually stop driving, but it should be done for the right reasons -- that they will become a danger to them or someone else. What we need to 10 focus on are the real problems of driving, and not the side issues related to them. We must embrace new ways to deal with people with AD and find new opportunities and technologies to use to our advantage so we can enhance the lives of those with this disease; so they can continue to lead a normal life for as long as possible. Do not fall into the one-size-fits-all trap because all those living with AD are different from each other and we must figure out a way to make everyone feel safe including those living with the disease. We are still human beings. My biggest fear is that one day I will have an accident and my license will be taken away. It may not have anything to do with my Alzheimer's, but it will be perceived that way. I have had 3 to 4 car accidents in my lifetime, some being my fault while most were others. We all have them.

As a person living with AD I seem to notice much more. I see many people run through lights, not use turn signals or come to a complete stop at the stop sign. I see people cut others off or shift in to other's lanes without paying attention. All I can think is that if people saw me do any of these things they would want to take my driver's license away, yet all of these folks are normal and they just get a free pass. Why?

If someone with Alzheimer's is stopped for a sobriety test they may fail because they have trouble following instructions or poor gait. They may also be much slower with their responses, and may even give you a blind stare because they are confused. They may not be able to follow complex directions. Directions need to be broken down into steps.

I know we want to make the roads safe so we need better testing methods for Alzheimer's patients who drive. Be prepared to deal with people who may seek help when they are lost. We can get lost while driving; this does not mean we cannot drive. These two issues are often confused by many.

The car should also have some sort of identification mark. It could be tied-in with the yellow dot system; however, I am concerned that we may become a target because of that. We are much more gullible because of this disease and that could be a very serious issue. I was someone who always kept all those scammers at a far distance, and now I am starting to fall prey to some and think it will only get worse as time goes on and I get worse. It could be on a driver's license, like a donor or class B license. It could be a code that is not obvious to all.

Weapons

While I am on the subject of issues with police there is a document, which I shared with the chief of police a few years ago. While some changes are being implemented in some parts of the US, I am not sure they are being addressed in PA. I tried to reach out to my local police department and training facilities, but was just blown off. One of the biggest and most serious issues that I feel needs to be addressed is that of weapons. I came very close to taking my life, and even told a police officer on the telephone, but he refused to do anything. I just wonder how many other people pleaded for help and ended up killing themselves because nobody answered their cry for help. This is unacceptable.

Sometimes people with dementia get confused or feel threatened and may make accusations that could land someone else in jail. Be prepared to deal with cases like this. They need to be handled very differently from someone without dementia. Some would say like a mental illness. They believe what they are saying is fact.

Alzheimer's patients can sometimes become very aggressive and defensive during an argument, they can even become threatening. This is the wrong time to try to remove them from their home. They need to be calmed down first; otherwise it can become a disaster for that person, because many will not understand what is going on.

We require a place to store or remove guns from a home when needed . I came up with a simple way that this could be accomplished without too much impact on the police. A gun safety device can be used to secure the guns in the person's home, and the key can be given to someone responsible. There were other suggestions made.

TECHNOLOGY TO ENHANCE QUALITY OF LIFE

In preparation for the 2015 AARP Dementia Care Technology and Innovation Forum, I wrote the following: These are ideas I have shared with others over the years.

I believe technology is critical to those living with dementia and their caregivers. But I want to emphasize that it needs to be very affordable or better still, free.

I would like to tell you a little about me. In my past jobs I worked in IT, Data Communication, TV & Radio repair and also did programming. I designed and built world class data centers. All of my life I came up with ideas that most though were impossible and the demands I made were unreachable. I can tell you almost all of them became real at a later time. And I have had some crazy ideas.

There are many different technologies already available that, once modified, will be suitable for someone with dementia.

Here are a few ideas.

A simple type pressure + mercury type sensor, which is addressable, could have multiple applications, such as keeping an eye on your loved one at night if they get up, or used on a door in the house to trigger an alarm.

Timers specially designed for electric stoves that can be programmed to operate during certain hours with automatic shut off during certain times of the day.

Special water sensors that can be added to every sink that will trigger automatic water shut off in case of overflow.

GPS use for tracking and wandering needs improvement. Battery life and service area are two key areas. The price today is unaffordable. There should be a special class of pricing for these types of devices when it comes to monthly fees.

RFID is a great tool in combination with GPS. Products can be made to just work around the house at no monthly cost.

We make alarm systems that have all kinds of sensors in the house which all report back wireless to one centralized controller. Why are we not looking to do that with all products for dementia? When I had a boat I had many gadgets on board and I was able to connect them all together so each on could coordinate with each other and give me the information I needed when necessary. That is how we should be thinking; a standard protocol to use and interface to make it standard.

My idea is to have a noise canceling head set that has multiple uses. A head band with a pin point accurate direction mic that when facing a person it will pick up what they are saying and not the surrounding noise or people speaking. It should also be able to be used standalone noise canceling and MP3 input. Must be easy to use as this is for people with dementia. The biggest problems I and many living with dementia is that we can no longer filter sounds out. When we are in public and someone speaks it all comes in at the same volume all mixed together. If I could focus on the one person I would go out more frequently to restaurants and public places. Many times in public places the noise is so loud that I cannot stand to be there. We need to make these as small as possible and to be somewhat attractive.

There are many ides I have about using technology in assisted living centers or places like them. Sound proofing and design is critical to people living with dementia. Colors and lay outs are all extremely important, as is lighting.

A simple solution that is in place but needs to be enforced, TV commercials on some stations are much louder than the regular scheduled program. That is enough to set me off or create agitation.

While there are many types of apps they need to be made easier to use.

My GPS system for my car is great. If it only had a dementia mode that would tell me much earlier to start moving over toward the right lane if I want to get of further down the road. Especially when doing high way driving or very fast. Many times I may not hear it at first as I am concentrating, maybe a simple voice command that can be repeated if prompted. All of this is possible with additional programming and mode options.

A simple solution needs to be created for those of us who live with dementia. The governments need to sell us a single card or give it for free to be used unlimitedly on and transportation system. I have lots of trouble buying passes and often end up going the wrong. They need to find a way to keep us engaged by using these systems. I believe this should be part of a bigger system as I have spoken about in my dementia friendly communities.

Wearable sensors can become another great area because many of these ideas can be incorporated into one devise: reminder for pills, when too eat, appointments or even how to get home if lost; or if you fall or such, panicking. The idea and applications are endless.

Google glass is one such product that could have such a huge impact for those living with dementia. It could help me get around help me remember what people say to me if it was set up to do all that. It has many limitations today and laws need to change. You are not allowed to record conversations today in many states and that is critical to people like me. You should be able to speak to it and say I am lost I need help and it would automatically take action.

Packages for easy dictation from a portable recording device to a word document. There are some things available but they need enhancements.

For me my Outlook is my brain but it does not easily connect with any other devices. That should be easy for someone to allow it to sync up to today. I am good at home but lose the capability when it's not available to me.

Since I wrote my drone idea I have spoken with Project Lifesaver who will have something similar out soon. While I think what they have falls short and way to costly, that organization does some great things and should become embraced by all. That would not only save money but save lives. Let's work with them to improve their system with technology. Below was what I have shared with them and others.

Let's save lives and reduce potential injury for those who wander because of dementia, including Alzheimer's. The task of searching for wandering or lost individuals with cognitive conditions is a growing and serious responsibility. Without effective procedures and equipment, searches can involve multiple agencies, hundreds of officers, countless man hours and thousands of dollars. More importantly, because time is of the essence in such cases, every minute lost increases the risk of a tragic outcome. This is a program that must be offered in all our states. After all, we give prisoners bands to track them for house arrest with taxpayers' dollars. Why don't good people deserve to be kept safe? Statistics show it will save money and have better outcomes if we all invested.

I have an idea on how we can find people with dementia who wander in less than 30 minutes. What is even more interesting is it requires very limited staff and is mostly automated. While this may all sound futuristic I can guarantee you this is all possible with technology today.

Picture this, someone goes missing and someone calls the emergency services number. Immediately they are identified as a person with dementia, and the operator pulls up the person's identification number from a pre-established database. They ask the caller for the last known location of where the person was seen. They enter that in the computer and hit enter which starts a search.

At pre-set locations, automatic drones equipped with GPS and RFID technology take off in to the air over a 50-mile radius, which is equal to about 7854 miles. That number can be greater or less. The drones have software that allows them to talk to each other from drone to drone. Within 10 minutes they will identify if they have located the position of the person missing. This can go one of two ways. I have made the assumption the drone can only identify signals at 10 miles radius based on RFID technology. That number is more like 12 -15 miles. So that will cut down on the number of drones needed.

If the person is located it will send back GPS signals of the location of the person to a central computer, which will automatically dispatch the police to the area. They are equipped with a RFID tracker, which can locate the person if they are within two miles of them. They will then find the person based on the signal. The numbers I use are very conservative so in reality it will be even better.

If no signal is detected the computer automatically expands the search to a much wider area or in a specific direction. There are many factors that go into how fast one would initiate such expansions. If a medical concern exists one may do all at one time. This would all need to be determined.

According to my numbers we have 3.8 million miles in the US and would need 8,400 drones. For the PA State, which is 46,000 square miles, we would need 102 drones. While this number was purely picked out of my head I believe for $250.00 a drone could be built with all that is needed to accomplish all this. This would be one that is self maintained. I have many ides on that alone. I am not surprised if the military already has designs for these or even others planning already.

Some assumptions are made in order for this to happen. All people with dementia who want to be in the program will register with their local police. They will be given a bracelet to wear that will be multifunctional.

The cost of this may not even be as high as we think because we may be able to tap into the companies who are going to use this technology. Amazon, Google are just some. I cannot imagine these organizations would not be willing to add software that will help benefit the community.

I was told that it cost about $10,000 every time we do a search. Let's do this more efficiently and quickly while saving lives. I believe this could all be possible today. I also don't believe it would take a long time. It can be started in one state as a trial and then branch out. Keep in mind that this system can have even more uses if designed properly. It can be used for other things such as weather, tracking prisoners, locating vehicles, etc. There are many other uses which could lead to shared cost.

There is a small cost to the bracelets as they would need their batteries replaced. Some places already use such system.

This is another idea I have shared with others. There is no website out there that can help those that needed. This one will help all and could be good for other causes.

Over the course of the last 6 years I have had the opportunity to see many sites that are geared to helping those impacted by dementia. So many times I see these folks struggle to get the help they seek. What I find even worse is that many of these people who are so desperate for information get bad or misleading information because people are willing to share their ideas with others. You have people discussing a topic they are unfamiliar with giving someone else recommendations based on their own experience or something they may have learned.

What is so wrong is that we have no system in place to help these folks, which is frustrating because no one seems to want to create a system that will help all of those who use the Internet today. I have recommended this idea to many and no one seems to be interested in building a system, which in my opinion, would be a lifesaver to many.

In order to build this system it would require IT folks to work closely with dementia experts along with caregivers and those living with the disease.

I see this as a very simple solution and it must be made available at a well-known site, such as AA or a government site. The system would be based on what I call the Helpdesk approach, which is used by many IT organizations.

When you call a helpdesk they need to ask you the least amount of questions so they can quickly route you to the proper department responsible for your issues. Their goal is to fix it on the first try but if not they do the hand off. I believe this system works very good if you know to ask the right questions and provide good answers that lead to solutions.

Here is an example of how I see this application helping those with dementia. It will need to be created like a flow chart with the right questions and to continue to drill down until you get to the answers the people are seeking.

When you first come to the site it will have the first question. Who am I? You would then be given a number of choices such as: I am a caregiver, I am living with dementia, I am a medical person, I am with the press, I am a friend or family person of a person with dementia, or I am a business. You could have more or less and while these are not the right names this gives you an idea on how it works.

Based on your answer it will start to drill down to another level. Let's say you selected "I am a caregiver". That now brings up the following question. Why am I here? You would then be given a second set of choices such as: crises, general education, what's in the future, resources, emergency, and support group. Again this can be longer or shorter based on the categories one can think of.

Now that you made a selection it will drill down to one more level. Let's assume you selected "Crises". It will now ask you to make another choice. What type of issue do you have? Now it is going down to the third level, which will have many categories on topics. This must be much longer.

Some of those choices may be: suicide, swallowing, falling, behavior issues, wandering, grooming, sleeping, activities, legal stuff, hospital, assisted living centers, products, resources, helpline, and call in line, medications, and hospice. Again this list will be much longer.

Now some may drill down to one or two more levels but most will end at this level. This is where you will provide detailed answers to what they needed. This will be the most choice for the reason they came to this site. This should help them with the correct answers for why they are here. When they select titles of description it will give them all of the details on a specific subject.

Let's say you had selected "behavior issues". This will take you to only information related to issues for items related to deal with behavior issues only. It may include ways to deal with them, where to go to seek help. Different types of issues and possible solutions. Each area should have an option that says I do not see an answer for my issue. They need to always have a way for an answer.

I do believe much of the information already exist in databases that we can already use. Not all sites will have all the answers so there is a need to allow for the answer to be linked to another site.

There is absolutely no doubt that if we create this system it will have a huge impact to helping caregivers and others affected by dementia. This will lead to better quality of life to the individual with dementia but also a lot less stress to the caregivers. They will be able to get to the answers when they need them.

I have many ideas and always willing to work with anyone in beta testing. I believe technology can allow us to live life to the fullest if it is done right and affordable. If we have the right engineers in a room anything is possible as long as they are all willing to work together.

DEMENTIA-FRIENDLY HOSPITALS

Being an advocate for dementia has driven me not only to educate myself on the disease but also to investigate how the medical world responds to our needs and requirements. Over time I have learned a great many things, one of which is that the US healthcare system is not appropriately prepared for those living with dementia.

To date, people who are responsible for implementing change tended to look at the situation from the caregivers' point of view, which is another major issue that needs addressing. We never ask those who are living with the disease what they want or need and I feel no polices or procedures should be considered without input from us.

Health providers and institutions must change in many ways to make it better for those living with dementia. Physician education -- Doctors need to be better educated, and need to commit to a more timely diagnosis so that patients can collect the benefits they deserve and are entitled. Doctors should not act like our lives are over. Once a diagnosis is made it should automatically trigger a referral to a psychologist or psychiatrist so the person can learn to deal with the devastating news. Many people are in denial and waste that last few years not knowing what to do. Instead they should be living life to the fullest. Make the memories. We must be encouraged to make living wills and put our financials in order quickly since our minds are going. We have no time to delay. Encourage participation in medical trails and offer frequent checkups. Living wills should be very different for those with AD. While this is a taboo subject we should have the right to end our life in a dignified way. We must talk about these issues.

Below is a list of issues that I have been working on with a local hospital in hopes of starting the first dementia-friendly hospital in PA. I was trying to build a training program with the Alzheimer's Association along with a question and answer session with people like me who are living with the disease. Below is the list I have shared with them. Some hospitals are actually doing a quick cognitive test by asking 3 words upon registering to see if there may be a concern even if the person does not have a diagnosis. I would expect that all hospitals would educate staff on the issues, for instance we can easily get lost while trying to find a department as an outpatient:

At registration, identify a person that can and will be able to be involved in all decision-making, along with the patient.

At registration, identify a person that will be given full access to all records on behalf of the patient.

Patients bring in a list of current medications. If for some reason you must change the drug or dosage for any reason, the issue should be addressed with the patient and caregiver to ensure there are no issues (even if it's as simple as converting to a generic). Sometimes patients cannot take another form of the same drug-ask them.

Example: My doctor switched me to Galantamine rather than Aricept because of side effects. In the hospital, they substituted Aricept. (My wife had Galantamine with her, but of course it is a big deal that you should not take your own meds.)

A special ID bracelet should be placed on this type of individual so the staff is alerted that this patient has some form of dementia. This will help them if the patient is acting confused or wandering or just needs a little extra help or explanation. It may also mean that the patient isn't great at making good decisions. If you need a color, purple is perfect.

Example: I needed a Fleet's enema pre-op. The nurse asked if she should give it to me or if I wanted to use it myself in the bathroom. Of course, I offered to do it myself. I found I had difficulty once I got in the bathroom by myself; a bad decision on my part. The nurse should have not given me the option. (We do not want to appear stupid or show our flaws so we may do something to show we are still capable when we may not be.)

I know they always ask the patient for their full name and birthdate -- hat may be hard at times for us. I can become confused on a good day, in the hospital it can be worse because of pain medication or being awakened suddenly or the stress of just being out of our routine. Maybe another way can be figured out. (Before a nametag is placed on a dementia patient it may require 3 or 4 staff individuals to ask the patient for that information and each must identify the same information before the ID is placed. This will insure the wrong tag is not placed on the patient. Use the verbal ask on critical things like surgery and drugs given the first time the nurse may see the patient)

There are special things one needs to know about using Anesthesia. Anesthetic agents are a cause for concern in AD pathogenesis. Luckily, the field of Anesthesiology has addressed these concerns in an excellent and honest manner. I would defer to their consensus statement:

http://www.anesthesia-analgesia.org/content/108/5/1627.full
http://www.mc.vanderbilt.edu/

The bottom line seems to be to avoid isoflorane.

Do not always consider a patient being confused as a part of the dementia, but it could be much worse due to the drugs they are on. When I was on pain killers my wife could not even get a response from me that made much sense, and she knows what's normal for me.

A real concern exists on what type of drugs the patient may receive for Anesthesia. Pain killers will also have a much greater impact on this type of person.

While ordering food from a menu is simple, it is very overwhelming for me to keep track of things and what items may even go together, or are even needed. I will probably need help with this task.

Don't assume we can figure out how to use items in the room like TV, Phone, call button, and anything else. Please point them out and provide a simple explanation on their use.

Aides should not be the first point of contact. I am not always good at explaining what I need and the aide was not always good at interpreting what I was trying to say. Aides are okay for follow-up or to help with food menus. Again this is why training on all levels is so critical.

When asking a question, give them a minute or two to answer without going on to some other question. You could even ask them to think about it and come back in 5-10 minutes, no longer. This is very subjective depending on the person. We often need a few minutes to gather our thoughts. We might even answer a question right away and then realize a few minutes later that that wasn't what you asked.

Somehow you need to insure the patient response is really correctly given -- they sometimes give an answer just to not appear stupid or show they did not understand. Maybe some visual aid or clues can be given along with the verbal depending on the stage the patient is in.

Try to keep items and things in the room in the same place once they determine the best location for them.

I personally feel these patients should be kept a bit longer than the average person, for observation. This would just be to make certain there are no issues at time of release.

Offer a pen and paper to keep in the room. Tell them to write down questions they want to remember to ask when the nurse comes in the room.

Keep in mind many patients with dementia can no longer spell correctly and may use the wrong context for words.

This is the wristband that was implemented for all patients with dementia at Brooksville Regional Hospital, along with this square magnet to be placed on the outside of the patient's room on the doorframe. Before any of these wristbands will be used, training seminars from the Alzheimer's Association will held for all of the hospital staff members. This is a major step forward in maintaining the safety of all dementia patients during hospital stays.

The hospital loves the purple angel logo, They went through three different band designs before this. The problem being that purple is also the national color for DNR (Do Not Resuscitate).. What I love about it the most is that it's for "all dementias," which is what we truly need in the hospitals.

Patients should be made aware of the living wills which should be very different for those with AD. While this is a taboo subject we should have the right to end our life in a dignified way. We must talk about these issues.

Recommendations to DAA Optimizing Health & Well-being Workgroup Members:

Dear DAA Workgroup Members:

After listening to the call yesterday and having time to think about it, I probably need to say that I do not believe there are any well established procedures for the Hospital systems on how they should deal with patients with dementia. While I believe there are some great best practices that can be pulled from all over the world related to care nursing homes, and environments dealing with what people refer to as behavioral issues, there are none that I have seen today that do the same for hospitals.

I have a lot of material that I pulled together that I hoped to start a first of its kind tool. While I was partially successful I realized the bigger stumbling block was the time these people needing to spend on education and the cost of that to the organization. I have also learned that from dealing with the hospital trying to implement the plan, that there is a thirst for this knowledge and they are extremely uneducated concerning dementia. I was very surprised that staff did not even know what dementia was in relation to Alzheimer's. It was very scary to hear them explain what I consider to be the basics.

One of the biggest problems I faced is I have no credentials to get these people to listen to me. I had a team of educators who were willing to dedicate their time to help create the course for the hospital I was involved with. It was all free to them. They felt it would take 3 hours to do it right plus taking the virtual dementia tour. They decided to do it in 30 minutes plus the Dementia tour. The problem was they did not make it mandatory. The staff has about 5000 and that is no mistake. Based on what I last know it probably had 300-500 actually take it. Mandatory is the key. I also realized while the dementia tour was a eye opener it left people confused of not being able to truly make sense of it all. That is where I believe I added the most value. We had a question and answer session with a person living with dementia. That I believed was the biggest eye opener for them and to tie together what they had just went through. I only had two people that could not get the concept but were changing to think differently about it.

I believe what is needed is to create a module lesson plan that is web based that is broken down in 30 minute segments. It should consist of 6 lessons that they receive CEU credits for. This should be mandatory for all new hospital employees within 90 days of hire. All this would be considered part 2. Part 1 would be the taking of the dementia virtual tour followed by 2 -3 30 minute segments of a filmed question and answer period. The questions are the best questions taken from medical staff and answered by the person living with dementia. There is so much to be gained from all that. Only after taking part 1 can someone take part 2. The other item of key importance is the ability to identify patients with dementia upon admission. I have information on ways to accomplish this within the HIPAA requirements.

The biggest problem I see with all this is the Virtual dementia tour. This is a bit more involved and requires live people to make it happen each time it needs to be implemented. Studies have shown that this must happen first to get the most of the education. I have many great ideas on how to make this all successful and many Dementia educators agree with what I have in mind. It would just take someone's time to spend time to speak with me and to convey it to others to make the best possible plan.

I have seen the Alzheimer's Association Plan and it even falls short. I heard it from their own high level people. They are doing something in Florida that is kind of good in the hospitals, but I believe it falls short. It was driven by someone who was a caregiver and they were looking at it from their viewpoint. It is good but failed to see it from my eyes as a patient.

I also am aware of a few organizations out there that one gets certified for taking their courses. I honestly can say I have not seen the material. There are only a few and they charge money for them. The very first question I have is who gave these people the right to say the have the best knowledge to educate us all and to claim they can give us a certification. They were very smart marketing people in my view and found a niche. I even asked one of the CEO if they had someone with dementia in the process and they were quick to respond they had caregivers involved. I told them that they had failed already in the process. In my last communication with them they were going to bring it up to their Board as they thought that was a good idea. I find it sad that these people are considered leaders and did not even think of something so simple.

In my opinion if we want to bring change we cannot focus at the hospital level. If we want quick change we need to go after places like the above and places like The Joint Commission, and others like them that provide accreditation. We need to work with them to insure they have the best model and they can help make it successful. I tried to do this early on but I have no credentials in their eyes. I think they probably laughed at me.

With this group and the support of some key doctors, part of DAA, I believe they may be willing to listen. I have had 3 stays in the hospital and all I can tell you is the system is broken for people with dementia. My recent stay at the hospital was after they had supposedly implemented some training. They had failed in my eyes as they totally failed me as the patient. It's one thing to not know what you do not know, as is the case with most hospitals today. But it's another when they do know the issues and fail to address them. So I guess what I am saying is we need to create the actual training material as I do not believe it exists today.

DEMENTIA-FRIENDLY BUSINESSES

Work environments should be created in which we can still feel productive without penalty to the employer or the person living with the disease.

I envision that businesses take a 2 or 3 hour course provided for free by the Alzheimer's Association and others, to make them aware of the issues that people with dementia deal with, and what they may need help with. On completion of the course they will get a sticker that they can display in their place of business that says Dementia-Aware with a picture of the logo. By doing this we will be creating awareness, and educating many on how to make it easier for us to still function as members of society; something that is not always easy when you are an adult who is facing progressive cognitive challenges.

Some of the issues may be

  • feeling panic in a large store when becoming separated from the person they came with
  • being asked a question and not being able to respond, or even giving the wrong information
  • having trouble locating items in stores
  • no longer being able to calculate how much they have spent or can spend if they have a budget
  • getting lost, losing sense of direction, or not being able to locate the car in the parking lot
  • it would be nice to get assistance when there are similar products to choose from, because I can no longer do comparison shopping based on price, or if an item in the same category is on sale
  • When it comes to purchasing tickets for travelling on trains etc. staff need to be aware that we may need help. We may not be able to check in at the airport unaided. We should not be penalized for not being able to take advantage of online offers because we cannot use computers. We may need to be taken to a gate or to a temporary room until our flight or train is ready (this does not mean we need to be ferried about in a wheelchair!)

Even though we are living with AD we should be encouraged to live life to the fullest. We need to keep our minds engaged. We should be able to do volunteer work, and to still do high level functioning jobs, and the company not be penalized, and the person with the disease should not be penalized by Social Security because they are working. As volunteers I would expect that our transportation expenses be paid for, and maybe even lunch. This will have a positive impact on the people with the disease and be of great benefit to a company that can utilize the person. Some do not want jobs like pushing hospital beds around, or doing simple tasks when we have a high function skill set.

Companies need to treat dementia like any other disability. The following comments are from an individual who works in Human Resources:

"Tell your story to HR Management. What kind of company do they want to be? How will they protect their human resource that has dementia - and be good risk managers by taking appropriate action to minimize the risk of litigation for wrongful termination under ADA? What are the costs of unrecognized dementia in employees i.e., lost productivity, errors, quality, odd/unexplained behavior, a decline in management skills leading to more of the above? What are the State percentages? Give examples -- If they are a company of 1,000 employees that equates to xx employees who will have early onset dementia -- can they afford to be blind to the problems these individuals will cost the organization? Alzheimer's is not all about the needs of the caregiver. Little to no attention is given to the INDIVIDUAL WITH DEMENTIA. If the company has a PEP program (Personal Employee Program that typically provides 8 to 12 sessions of counseling when an employee suffers from personal problems (divorce, runaway kids, elderly care, etc.) why not have a Dementia Hotline/Exploration. Why not help people self-diagnose early and assist them to seek a medical diagnosis, so TOGETHER the employee and company can make a plan for them to ultimately exit from the company with dignity - example: an employee is still skilled, but may need to move from having the responsibility of being a manager to becoming an individual contributor. Why wait to FIRE someone for non-performance, when you could continue to employ the person until the day comes where there is no job which matches the employee's skills. A diagnosis of dementia IS protected under ADA. Why wait to be sued by an employee who was unfairly terminated because of his disability. Why not be proactive and humane, keep the person off unemployment; mitigate your exposure to litigation. Such a small cost to set up a program to assist and empower employees to work TOGETHER with them, give them dignity and determine together when it is time to go. Help them transition to retirement with disability; unemployment; assistance from the Alz Association."

I would like to see a simple pamphlet be put together for those who are living with the disease covering all the benefits available to us living with dementia. It must be simple to understand, short and to the point. The procedure should include all of the resources available and where one should turn. Today one has no clue and they do not know what is available. This should be handed out with a diagnosis from your doctor.

Laws need to change so those who are getting fired can collect the benefits they deserve. Let's stop burdening the social security system. Because there is no clear test for the diagnosis of YOAD, many diagnoses are delayed. Many people are terminated from jobs, and are unable to collect their long-term disability insurance, because of the two-year law. Most diagnoses occur much later, as in my case. I paid a lot of money into a long-term health disability plan in my company and I lost it all because of the law. I now get less than a third of what I would have been entitled to, and no medical coverage which I would also have had, all because of a law that does not work for individuals with this disease. Changes must be put in place until we have better tests available. If someone is terminated for non-performance and they have been diagnosed with dementia at a later time, they should have the right to go back at least six years to prove their case. Companies should not get a free pass because we all pay for this injustice. The two year law is a failure for people like me with dementia.

I was terminated from my job before I got a diagnosis which took another 6 years. Now I am forced to rely on government disability. Dementia is a disease, and the people who have it should be treated that way.

FINANCIAL ISSUES & NEEDED SYSTEM CHANGE

Younger-onset Alzheimer's, also known as early-onset Alzheimer's, generally refers to those who are affected by the disease before the age of 65, usually in their 40s or 50s. Because of their younger age and healthy appearance, doctors often attribute symptoms of Alzheimer's to depression or stress, resulting in delayed diagnosis. These symptoms, such as challenges with short-term memory, impaired judgment and difficulty making decisions, eventually progress to a point where they affect workplace performance, and ultimately, jeopardize employment. Many individuals living with younger-onset Alzheimer's are in their prime earning years and supporting loved ones at home. The loss of income and access to employer-sponsored health benefits can be devastating.

This document reflects State and Federal issues that may not be working. My goal is that if the existing jurisdiction responsible is not able to enhance the process, the other will step in and fill in the gaps so people are not impacted. It is my hope that they can work together to fix the weaknesses in the system that may have been overlooked.

To help address their financial need, many individuals with younger-onset Alzheimer's rely on Social Security Disability Income (SSDI), or Supplemental Security Income (SSI). In March 2010, the Social Security Administration (SSA) added early-onset Alzheimer's to its Compassionate Allowance Initiative, which expedites the disability determination process and serves as a trigger to begin the two-year wait for Medicare benefits for those under the age of 65. Family members (e.g. spouses and minor children) may also be eligible for benefits based on the applicant's work record. This addition by SSA has been a huge relief for individuals and families dealing with Alzheimer's.

However, many are treated like they are crooks when they apply for Social Security Disability. It creates an added burden on the family and the patient. People say that the Compassionate Allowance act will help people, but it did not help me, and many keep saying that it's not working.. The following story is from an ongoing case. This program may be better but the people who run the programs are clueless in many ways on what a person with AD can or cannot do. This person is not only struggling financially, but has no one to look out for them. I cannot even imagine the hell they must be going through because it would take me forever to complete the same forms.

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It's so nice of you to think of me. I wanted to add that the reason I was turned down on the first application and reconsideration was because I filled out the RFC form myself (I lived alone at the time and it was a necessity) and not for lack of medical evidence. My son now lives with me but only minimally supervises me and does the driving. An examiner at Social Security took it upon himself to send out an investigative unit because he felt I must be faking Alz even though in the course of the application and reconsideration, I saw 5 doctors, 4 of whom thought I had Alz disease and 1 CE examiner who thought it was possible but hesitated because I still have average intelligence (my IQ was in the 140s when I was in graduate school and now around 100, which I think this is an alarming decline). This SAA evaluator then proceeded to imply that all the doctors I saw were fooled. He even sent out an investigative unit to actually videotape me without my knowledge (following me to one my CE appointment one day and sending undercover police officers to my home the following day). I don't remember the investigators coming to my home and didn't see them at the hospital (obviously quite good at the stealth part). At the hospital, the doctor walked me out to the lobby because he was afraid I would get lost said a few minutes later I "disappeared (I got my ride, of course)." They went back to the doctor looking for me, and he apparently was very concerned I had actually gotten lost in the hospital. At my house, they said I walked slow to answer the door but I didn't limp (???) and was polite and had my hair combed (implying I was not disabled based on my outward appearance and probably less than 30 seconds of conversation). The evaluator felt that anyone who could describe their symptoms on an application, write mostly coherently, (though always needing multiple edits, spell check, and entailing a lot of repetitiveness) answer the door, use a phone, live alone, or drive in the early stages had to be faking it regardless of MRI, neurological tests, etc., that clearly gave me a diagnosis of EOAD. Long-winded, I'm sorry. I'm still feeling kind of abused and outraged. As for now, my lawyer thinks he can get me a hearing OTR and I'm hoping for that and a favorable decision If not, it will be another 12-15 months before I have a hearing date, this because the SSA evaluator apparently does not understand that earlystage Alzheimer's is not immediately visible on the surface. In the meantime, I am now in the process of selling my home to live with my adult son as we can no longer afford the upkeep (this is a modest home -- but now far above my means).

I'm very lucky that my son is living with me to help, but it means I do not qualify for Medicaid because his income is now considered my income and puts us just above the income limit. He can't put me on his insurance as I don't qualify as a dependent because of my small LTD policy, which in turn needs to be repaid to the insurance company if I do get SSDI. I've gone from a single, self-supporting middle class woman, to lower middle class, now to poverty level in the course of about 4 years. Without my son's help, I'm probably within 3 months of living on the street. At the same time, I'm suddenly placing a tremendous burden on him and fouling up his goals in life.

Another note: I find it ironic that my neurologist tells me to exercise vigorously, take care of my health, and socialize as much as possible in order to function longer whereas I sense the government is telling me that I'm not eligible for disability insurance (despite working since age 13 and paying into the system for years) unless I give up, lie in bed, and wait to die.

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It would be great if the Alz Assoc could find a way to educate the SSA evaluators on what Alzheimer's disease looks like in younger people in the early stages so that other people don't go through what I'm going through now. It would also be great if they could lobby for earlier Medicare benefits (rather than the 2 year wait after SSDI) for all disabilities that are only going to deteriorate.

Once we have a diagnosis, we should all be entitled to the same level of benefits no matter what our age is. One should not be impacted by other laws that were not designed or intended for those living with this type of disease. There are many state and federal programs that limit us from being able to contribute to or benefits we are not entitled to because of our age. Family savings should not be wiped out just because one has dementia. A family should have a cap on what they must payout. Why should the surviving spouse be left penniless because their partner was sick? Is it enough that most of us have already had to deal with financial hardship we were not accustom to? Pa. Caregiver Support Program: care recipient/household income must be @ 200% of poverty or below for max. reimbursement.

Below are just of a few of the ways this disease is costing me more money than ever:

I once did most things around the house and now I have to rely on others and the cost is adding up very quickly. Many things are becoming neglected which will have a greater cost in the long run. I used to be good at comparison-shopping and now I no longer do it because I cannot recall the price so I can compare. This has such a huge impact from food, gas, utilities and everyday items.

Furthermore, under the Patient Protection and Affordable Care Act (PPACA), individuals with a pre-existing condition receiving SSDI can join high-risk insurance pools and receive immediate health insurance coverage while they wait for Medicare benefits to become available. This has been particularly helpful for those who are unable to find affordable health insurance because of their Alzheimer's diagnosis In addition to the cost of care, Alzheimer's imposes an immense burden on families. Last year, there were an estimated 671,000 unpaid dementia caregivers in Pennsylvania, providing 765 million hours of unpaid care valued at over $9.3 billion. Unfortunately, the physical toll of caring for Alzheimer's also resulted in over $472 million in additional healthcare costs to unpaid caregivers in your state. To assist those who care for people with Alzheimer's in Pennsylvania, the state offers the Pennsylvania Caregiver Support Program. Preference is given to caregivers of care recipients who are 60 years or older, but eligibility was recently expanded to include care recipients who are 18 years or older. All care recipients must demonstrate functional limitation and financial need.

Regrettably, age is still a barrier to other support programs for individuals with younger-onset Alzheimer's and their caregivers. All caregiver support programs that receive funding under Title III of the Older Americans Act require care recipients to be at least 60 years or older. Likewise, Pennsylvania's Medicaid 60+ waiver and aging block grants are only available to those who are at least 60 years old. Restricting eligibility by age, rather than diagnosis, forces many families affected by younger-onset Alzheimer's to exhaust their own resources and put their own health and financial security at risk.

Health providers and institutions must change in many ways to make it better for those impacted. Physician education -- Doctors need to be better educated, and need to commit to a more timely diagnosis so that patients can collect the benefits they deserve and are entitled. Doctors should not act like our lives are over. Once a diagnosis is made it should automatically trigger a referral to a psychologist or psychiatrist so the person can learn to deal with the devastating news. Many people are in denial and waste that last few years not knowing what to do. Instead they should be living life to the fullest. Make the memories. We must be encouraged to make living wills and put our financials in order quickly since our minds are going. We have no time to delay. Encourage participation in medical trails and offer frequent checkups.

Living wills should be very different for those with AD. While this is a taboo subject we should have the right to end our life in a dignified way. We must talk about these issues. We must encourage research and provide funding. In order to eradicate this disease we need to find more sources of funding and redistribute current government funding to bring Alzheimer's to a level comparable to other disease research. Trials need to provide more flexibility by using technology. Many are unable to participate due to lack of flexibility. Some people do not participate in clinical trials because they feel it will not help them. They need to know that it's not about them but what they do can help someone in their family should they get the disease. Since a cure may be long in coming, it would also be nice to see more funding provided to investigate treatment methods to maintain independent function longer. The drug companies have taken the stage and it's all about what increases their profit and not necessarily about what will help the patients.

Make government grant programs free, fair and balanced -- Some researchers using government research grants are discriminating by age and minorities because of rules being set forth by both the provider and the receiving researcher. This will prevent the formation of an accurate picture of this disease. For example, black people are twice as likely to get Alzheimer's. Why?

Eliminate the term Caregiver - Come up with a new term for the word caregiver when used for people in the following stages

  1. Very mild decline
  2. Mild decline
  3. Moderate decline.

We find it very demeaning and do not like being treated like a child. Help us where we are weak, but don't give up on us just because we have now been labeled with Alzheimer's.

BUILDING COALITIONS

We need a way to break down many of the silos and build a coalition of companies and sites to work as one. Leaders Engaged on Alzheimer's Disease (LEAD) is a diverse and growing national coalition of member organizations including patient advocacy and voluntary health non-profits, philanthropies and foundations, trade and professional associations, academic research and clinical institutions, and biotechnology and pharmaceutical companies. The only sad part is the Alzheimer's Association National has not joined due to not being able to set politics aside. Another example while it is early in the development is Dementia Friendly America (DFA). It is only this way that we will be able to address the issues. Government or one company cannot do this alone.

http://www.leadcoalition.org/
http://www.dfamerica.org/

This is all part of the problem - a lack of willingness to work together. I am not sure what the state can do here but we need to find a way to encourage others to work in harmony for the greater good of what we all seem to claim. We are doing this for dementia. Sometimes I really wonder and I think it's just a business for these folks.

I know I have made many recommendations around the use of the Alzheimer Association as part of this document. Because of that I want to give full disclosure. I was a past ESAG member and an ambassador for them. For those who know me they would tell you I am not influenced by others and my dedication is to those impacted by the disease. With that being said I do feel they deserve a lot of credit for what they have accomplished in the last 30 or more years. They take a lot of heat for some issues that are out of their control due to some high level expectation of the public.

On the other hand I do not want you to think that they have all the answers because I and many others realize that they do not do justice for many like me who are dealing with the disease. They focus on the caregiver and not us. Part of the problem in my eyes is the lack of a business-mind across the board, and lack of a CEO approach to business. Because of that scenario there is much inconsistency in the organization and much time is lost in understanding our needs and minds. That all leads to very slow response or lack of response to the very services they think are great. They have this internal mindset that everything has to be done a specific way and that is always the right way, yet the people are not given the tools. The sad truth- it is not and I have worked on changing some of that and I can assure you it's not an easy task. I encourage that we continue to work with them but at the same time we need to demand change and at a much faster pace. As I update this version today they are in the process of doing exactly what I had recommended back in 2012. I do believe over time this will benefit all of us. I also think it will be painful along the way. We need to keep the best practices from the chapters that do good and make those programs standard at all chapters. For example my local chapter does not include people with dementia on its board unless they also contribute 10,000 dollars, yet others don't ask for money. I also believe top management should not grow. They should also focus on what is important for the people living with dementia instead of being focused on their financials or do anything controversial. The mission should and must be focused on those impacted by the disease.

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I am sharing this with you in hope that, as you do your planning, you take my findings in to account when making recommendations to others. We must treat all people who are living with dementia, regardless of stage, with the highest level of respect all the way through to the end. While this may not apply to all, it would appear that many who are even in stage seven are still able to communicate in some way.

ADDITIONAL LETTERS & ARTICLES

RECOMMENDATIONS TO ENHANCE CLINICAL TRIALS

TO: Pharmaceutical Executives
FROM: M. Ellenbogen - Advocate & Person living with young-onset Dementia
RE: RECOMMENDATIONS TO ENHANCE CLINICAL TRIAL ENGAGEMENT

I have always had a different view of things than most people, which led to business success and meaningful contributions to many organizations throughout my life. I know that important issues must be addressed by top-level executives. I appreciated good suggestions from clients and acted on them when I saw the benefits. That is my goal with these recommendations to you. Most can be done with little or no added cost while enhancing participation and accuracy in clinical testing:

Development through Collaboration
Bringing a new drug to market has become very challenging for many reasons that you are aware of. Considering that Dementia, including Alzheimer's is the third leading cause of death in the US your companies need to step up to the plate collaboratively to deal with this national and global societal epidemic.

While I understand you cannot do it alone there is no reason why you cannot partner with others in your arena. Identify ways others have already tested to stop wasted duplication. Concentrate efforts together and share the profits in the end. With the access of technology today we must really change our ways of how we do business. A clear database must be established on all failures. This will be a huge cost saving to all in the world. The price of creating it would pay for itself in no time if all contributed to such a project.

National Registry
A national registry of people living with dementia should be created and shared for all dementia-related clinical trials. This should be a collaborative effort by all companies and entities engaged in clinical trials. Consider incentives to get people to register.

Reposition the Benefit of Clinical Trials
A major problem is getting people into clinical trials. Trials are often described as "the possibility of a cure with no guarantee or access to the drug at a later date". Most caregivers and patients feel that it makes no sense to go into these trials. Most say it is hopeless for the patient and not worth doing.

I believe you need to say that participation today may lead to future benefits for their spouse or other family members that may be impacted by this disease in the future. Everything learned today will lead to success for the future and will be able to help others who may never have to walk in our shoes. Consider how compelling this approach would be to caregivers who are often the influencers or primary decision makers.

Reduce Involvement of and Impact on Caregiver
A major barrier to participation is the added burden on already-overstressed family caregivers who cannot afford to take extra time away from their jobs to accompany their loved one to additional and unnecessary visits for trial sign-up and appointments. Many caregivers are afraid they will be fired or lose pay for taking off so much time; these unspoken fears are a significant invisible barrier to participation!

Don't Diminish the "Personhood" of Potential Participants
An important barrier to participation is the tendency to treat the person living with dementia as incompetent. "We are still capable of doing many things on our own and should be treated with the same respect and dignity given to other adults."

Use Technology for Sign-up Flexibility
New tools like Skype, Zoom should be used to simplify the sign-up process by using a computer or tablet. Create a simple disk that takes care of all the steps to insure the technology is not an issue for the user. I had setup an appointment to volunteer for a program. I received a call that I would not be able to attend if I did not have a caregiver with me. The reason they need the person is so that they can complete a short survey and complete some paper work. All this should be done remotely.

Cost Factor
I believe the cost for participating needs to be covered 100 % as soon as they enroll. Some cannot afford any delay as they are struggling already. The average family is hurting financially due to this disease. People should not lose money because they are trying to do something good. Most likely what they are doing will not help them but the benefits gained could be priceless to others. Keep in mind that they are offering their bodies and being in a clinical trial is very stressful to them and their family.

Changes in Neurological testing
I believe information collected from Neurological testing is flawed because they always use the same words. There should be 3 or 4 different card sets that are alternated throughout the process. You especially do not want to use the standard ones I use with my regular doctor because I have them memorized.

Valid Self-Reporting is a Major Problem
I understand the need to get a list of side effects or issues that may be impacted by your trial. When we come in for a visit, the doctor asks us if there are any issues to report. We are struggling to remember what we ate a few hours ago and they expect us to know what issues accrued. This is not like other clinical trials because it is extremely hard for us to give you accurate information. It may even be wrong information that we believe is true. You need to consider how valid this approach is.

Partner with organizations that do not charge any fees for service
I heard a doctor speak about the NACC program stressing their need for volunteers, so I wanted to help. The program was subsidized by government grants and Pharma. After sending in my records it was determined I would have to pay for a doctor's visit just to get into the program. If this is a government sponsored grant with some of my taxes and others who are no longer able to afford the cost, why do the good people who support these programs have to pay? Especially when one wants to volunteer his time and body to help the program.

Because of these fees, I feel that the results may be skewed because the only people who can participate are the ones who have money, which tends to be high-functioning people. Where this hospital was located has a much higher population of African Americans and Hispanics. I believe they may have a better chance of holding the answer to the cure since they are more likely to get it.

Make it more personal
Since participants are meeting with a doctor, give them feedback on noticeable changes in their condition. We really do want to know where we are in our capabilities. We should not be treated like someone with a number. Make it a bit more personalized; give out a mug or other small gift. Just do a little; it will go a long way.

Provide Comfort & Engagement
Many times one needs to go for testing and stay for hours to be monitored. Provide something meaningful for them to do while they are there; TV, tablets, videos, etc.

Testing schedule
In my case I need to see 3 service providers (eye doctor, MRI and dermatologist) every 3 months; and they are in different locations. If it were up to the office they would schedule all on different days. They should schedule all for the same day so you can go from place to place with time in between appointments. With better coordination and planning that should be able to be done. This needs to be in your request to doctors to follow as part of protocol. There should still be the option to go to only one each time. Need to have flexibility.

Transportation
Many people who have dementia are no longer capable of driving or even taking public transportation to get to these appointments. Contracting with local transportation for participants would be most helpful.

While I know there are limits on your part to talk to me directly, I do welcome that opportunity. Please feel free to reach out to me. As a consumer and patient I believe I have a different viewpoint. I can also appreciate your side from the business world. I don't have a long time so please contact me soo n.

LIVING LIFE WITH ALZHEIMER'S DISEASE

Below are some articles I have written in the past, you may learn how someone with AD is dealing with this disease. These are my favorite that I feel people have been able to learn and see another side that they did not know before.

I have worked on this for about five months, and recently I shared the email below with many sites related to AD for feedback. Most of those who had reached out to me were able to support my findings. The bottom line is that while most of us have limited thinking capacity many are able to communicate; we just have to find a way that suits the individual. I received a lot of feedback. My biggest concern is that most people are clueless, and assume that we cannot understand what they are saying about us; many say cruel things. Just try to imagine for a minute what it would be like to hear what others may say or do to you, and you are never given an opportunity to defend or express yourself. That is what is happening to most of these folks.

We must find a better way to educate caregivers, health professionals, and all those working with people living with this disease. The biggest problem I see is that everything is time-based because of the costs. This view will not work for people. It will also take special training, and the need to break with our normal habits of communicating. If we are going to be able to reach out to them, we need to change. We are still human beings and we deserve to be treated in a respectful and dignified manner.

My name is Michael Ellenbogen and I have been living with AD much longer than most people who have had this devastating disease. I am in need of your help to prove a point. Let me explain.

I have learned that as we progress with Alzheimer's/dementia, we lose our brain functioning and can no longer think. I am starting to believe that this is not true.

It has now happened to me on multiple occasions where I was asked a question, and I am able to formulate the answer in my mind, yet I found myself unable to verbalize it. Sometimes my mouth may move but nothing comes out. It was the weirdest thing, and I could not understand why it was happening to me. I was aware of what was going on, but could do nothing.

Since that time I have asked 18 other people with some type of dementia, and of them 16 had similar experiences. Two of them said they had not. This makes me think that as this disease progresses our brain may still be functioning, yet it is unable to communicate with the rest of the body, allowing it to have less control than it would normally have. I truly believe I am on to something, and was curious as to how I can try to prove this theory.

Let me give you an example. About three years ago I met the daughter of a man with AD. He was no longer communicating with her because, she was sure, he could no longer communicate at all. Someone suggested she ask a question, and keep totally silent for at least two minutes after. About a minute and a half later he finally responded to her question. From that time on she realized what she had to do and was thankful for that advice.

I don't want you to think it's going to be that easy; it will take a lot of work, patience and persistence on your part. Here is what I would like others to try for someone who is in the late stages of Alzheimer's. First of all take the person to a very quiet room; it should not have any kind of background noise even from things like an air-conditioner blowing. Those noises are real problems for me, and would assume it will be a bigger issue for them. Such noises really have an impact on my ability to process and focus. You should also do this at a time of day that they are not tired. It becomes very challenging for us to try to focus and listen to what others say. It really becomes tiring, and we get burned out quickly.

When you start to speak to the person use short sentences, and pause in between them so they have time to process what you are saying. That is very important. Tell them that you think you have found a way to communicate with them. Tell them you are going to look at them closely for some sort of sign. It could be an eye movement, maybe looking to the right or left or down or up. It could be a smile. It could be a finger moving or a fist being made. It may even be them sticking their tongue out. I would start by focusing on parts of the body that may still show signs of control. You must become a detective and keep looking at various body parts for some sign. It may not happen the first time or even a second time. It may never happen and I could be wrong. But if I am right just think of the benefits that will come out of this for you and your loved one.

Reassure them that you will continue to look for a signal and they should keep trying the best they can at their speed. Ask them a simple question like "do you love me? If yes lift your finger or lower your finger". Again you will need to keep quiet, and observe for at least two minutes. Keep doing this and try this with different parts of the body. They may not have control over certain parts, and that may be an issue. If you do see something make sure you point that out to them and ask them to do it again to insure they really are responding. If this turns out to work find a way to use that same body part to get yes or no responses from the person. Keep in mind that this may not always work and you may need to be creative. Maybe just keep the finger raised longer if they mean no, or tap it twice etc., but that may be too much to ask.

Also keep in mind if the person has not had any real dialogue with someone for a long time this would also take more time. No matter what do not become discouraged, try this at least three different times on different days. Like I said this may never work and I have it wrong. If this does work please reply to this site with your contact information so I can speak to you. If this works for a few it makes me believe that we need to treat these folks completely different to the way society treats them today. This will change so much about what people really believe is happening to our minds.

Tips for Visiting by Laura Bowley, Director, Mindset Centre for Living with Dementia

On the heels of a much-publicized plea from Alan Beamer--a gentleman in the USA with Alzheimer's disease--for his friends to visit him, Michael Ellenbogen and six other people with dementia participated in a meeting to discuss barriers to visiting people with dementia. The discussion took place via Zoom video conferencing and was recorded with the participants' permission. A portion of the taped discussion was turned into a short video to let Mr. Beamer that he was not alone, that most people with dementia experience a drop-off in friends, and that the stigma of dementia affected them too.

All participants agreed that friends not visiting is--as one participant said--"epidemic." As an example, Kelly talked about his own brother, who also has Alzheimer's disease. He has been pushed out of a Board he sat on, and the decline that has taken place since has noticeable.

Michael said he could relate to Mr. Beamer's situation and found it heart-breaking. He suggested that society adapt to conversing with people with dementia by not speaking as quickly or by not using long sentences; be conscious of when one is "rambling" when speaking with someone with dementia. People with dementia spend a lot of time processing what is being said, and Michael suggested that the other people involved in the conversation could use short sentences and leave up to a 90-second response time for the person with dementia to digest the information and formulate a response. Michael felt that while it's important to educate people about allowing time for a response, it is equally, if not more important, to educate people with dementia that it's OK to be in these situations where they might not always speak coherently and require extra time, rather than choosing to shy away from conversations.

When asked if it's easy for people to sit through 90-second gaps in conversation, everyone agreed that it's a very difficult thing! We are primed to jump into a conversation and we look for the cue of silence to speak. It's very hard to break this habit.

Michael pointed out that a 90-second gap is a guideline, but someone in the earlier stages may not need as long, while others may need more time as the disease progresses. Michael said that he easily loses his train of thought and gets lost in a conversation if the others do not pause and be silent until he catches up.

The group talked about ways to facilitate a conversation, recognizing the need for gaps.

Susan noted that the topic of conversation during a visit with a person with dementia can be anything that one used to talk about; topics don't necessarily need to change with a diagnosis. For example, Susan said she can still talk about big topics, such as climate change. She continued by saying that

activities help create a common ground and again, can be anything the friends enjoyed previously, including listening to music, playing instruments, going for walks, puzzles, and games adapted to the person with dementia's changing abilities. These activities are appropriate "pretty far into the progression."

Jan talked about being in a group of people and the challenges for a person with dementia of participating in the conversation. If the conversation begins to go on without the person with dementia, as tends to happen, how will the others in the group know when the person with dementia has something to say? One would expect the onus to be on the others in the group to be mindful of the person with dementia, but Jan pointed out that it's also the responsibility of the person with dementia to take the initiative to ask to return to a topic. While this might be difficult for a person whose symptoms include apathy, it's interesting that we need to make room for a person with dementia to take that initiative, to allow that person the freedom to take responsibility by not stigmatizing him or her as someone incapable of taking responsibility, and that a person can feel so stigmatized that they themselves feel incapable of taking that responsibility. As Michael said, part of the problem may be that some people with dementia self-impose limitations; they choose not to go where it's noisy, for example.

Susan noted that there's no "one size fits all" solution for inclusion in a conversation because each relationship is different. She talked about one idea for navigating a conversation where periods of silence are required: a talking stick. Only the person holding the talking stick may speak and a person can give up the talking stick if he or she has nothing to say. But this can only be done with people who are open to using this system. Basically, the person speaking need only give some clue that he or she needs time, but the onus is on that person to express the need and the signal to be given. The talking stick can act as that signal, but our job in society is to make it OK for people to express their needs and to talk about what works. Susan says she doesn't mind silence; one can learn to be silent.

On the opposite spectrum, Michael said that in board meetings he is given permission to interrupt because the others know he would lose his train of thought otherwise.

As a whole, the group admitted to being very aware of forgetting the words for things -- the nouns! Teresa talked about the stress she puts on herself when she goes out and can't remember the correct names for items, so she's better at home where an environment has been created where it doesn't matter if she substitutes the wrong words. But when she is out, she is acutely aware of how others may perceive her if she uses the wrong word. Chuck said that having dementia can affect one's ego--how one thinks he or she is perceived by others. People with dementia don't want to be seen as "the village idiot."

Teresa says that people need to walk in her shoes--to use her brain for an hour--and then people might understand how hard it is and how hard she tries. People with dementia know their limitations and the need to get others to recognize their limitations. As Teresa says, "If I had no arms or legs, you'd see that and you'd know how to help. You can't see my disability, so it's on us to try and let people know how they can help."

As an example, Teresa decided to let a neighbour know that she has dementia She asked the neighbour if the flag on their house was left up all year, as she was planning on using it to orient herself to the location of her own home. She told her neighbour that she has dementia, and since then, if he sees her out walking or on a run, he'll stop his car and roll down the window to check with her that she's OK.

The Realities of Alzheimer's and Overcoming Stigma

Alzheimer's disease and other forms of dementia affect more than 35 million people worldwide today. An astonishing fact that today someone in the world develops dementia every 4 seconds. By the middle of the century more than 115 million people will be affected by the disease, if we do nothing.

My name is Michael Ellenbogen, and I am living with Alzheimer's and trying to make a difference. I was previously a high-level manager in the telecommunication industry. In 2008, I was diagnosed with younger-onset Alzheimer's disease (YOAD) after struggling to get a diagnosis since my first symptoms at age 39. Losing my job and not being able to work had a huge impact on my life as I was a workaholic. I am now an Alzheimer's advocate and a spokesperson for the Alzheimer's Association (U.S.) as a member of its national 2012 Early-Stage Advisory Group.

I am so frustrated, because no one realizes how seriously disabled I am. If I had a loss of limb or some other visual ailment, it would make people realize. I don't want them to feel sorry for me or pity me, just want to be understood. So many people say you do not seem to have Alzheimer's, and that frustrates me. Let me tell you what it's like to live with this debilitating and progressive disease.

Imagine for one minute that your friend, relative or family member has Alzheimer's and has to deal with the following issues. When I go shopping and look at items, most of them never really register in my mind, even though I see it clearly. I have trouble making decisions, because I question whether I am making the right one. I can no longer enjoy my favorite hobbies, because it requires processing skills that I no longer have. I went from being a gadget person, to now being threatened by technology that I no longer can use. This is what I deal with and so much more.

I go to a happy affair only to be tortured by the noise and surrounding conversations, because of the loudness that cannot be filtered out. If people try to speak with me in a public setting where there are many other conversations, I just don't understand what they are saying. This is because all of the people speaking come in at the same volume level. All the words run together, and it sounds like a foreign language.

I went from being extremely proactive to becoming much less active and motivated. I leave things around the house and don't put them away, because I don't know where they go or feel I may not know where to retrieve them again. One moment I am nice and another I may fly off the handle. I can no longer write or speak like I used to. My friends slowly become distant and usually speak to my wife. I do realize this.

I worry every day about the challenges ahead. Or even worse, I am losing my mind and see it happening, but I cannot do anything to change the course. People always say "if I can do anything just let me know." If I take them up on that offer, they back out of their commitments. I have become extremely surprised by the lack of public commitment to my pleas for support of Alzheimer's disease. While some may be sympathetic in the moment, there appears to be little follow-through. This is very upsetting, because I feel as though it affects me personally as well as the millions of others living with the disease. I was always there for others when they needed it and now I feel alone.

While many people just coast through the day, I have to use 110% of my processing skills to do most things, which increases the stress and frustration. The worst part about this disease is knowing that I am doing all these things wrong and have no way to control or stop it, and it's only getting worse as the days go by. I used to save lots of money by doing so many things around the house. Now I lost the drive, determination and skills needed to do those things. Many times I hurt myself trying or make it worse.

I cannot begin to explain how it tears me up inside to see my spouse struggling to do the things that I once was capable of doing and know I cannot do a thing to help. I realize that one day I may no longer be able to drive and this devastates me. I see my wife becoming stressed, depressed and overwhelmed, but caregivers know it will only continue to get worse. Sadly, they keep telling themselves that they can do it all even when we know they will need help.

I, the patient, see it definitely. My wife is on the road to hell, and she does not even realize it yet, because she is so busy trying to block it all out. The worst part about all this is, I have not even reached the worst stage. That scares the hell out of me.

I have been so surprised by the stigma associated with this disease. It comes at you from all angles. People think they know what Alzheimer's is, but they don't. I see this not only from people living with dementia but many media health correspondents, physicians and organizations that are geared to helping those deal with the disease. I have learned that I do not want to share my diagnosis with people I meet until they get to know me. If I was to tell them upfront, I would be treated so differently, which I have learned. I kind of see this disease like HIV used to be. The people who have it are so afraid to let others know, including family. I do not get it. We did nothing wrong to get this disease, and we need to speak up to let our voices be heard. We did nothing wrong and no one should be ashamed of having it. I feel so much better when I share it with others than when I try to hide it.

Because of my frustration with the existing environment for people with dementia, I realized change was need. I decided to use my few skills left to advocate. I have spent some of my last few years being on television, radio, newspapers, many blogs and working with many politicians. I also had an opportunity to speak at all of the public sessions to develop the first U.S. National Alzheimer's Plan, all this on my own. But that was not enough, because I ran into so many people who just did not want to get involved. I was a volunteer for the national Alzheimer's Association Early-Stage Advisory Group. If there is something I want you to walk away with it's that you can make a difference, but it will take persistence. Write a letter to your public official or reach out to local support organizations to create needed programs and services. Your voice and your story are powerful tools. Please get involved.

The simple truth is, if you have not been touched by this devastating and debilitating disease yet, consider yourself extremely lucky. Sadly, it's just a matter of time before it touches you. It is my hope that my actions today may prevent future generations from suffering with this disease. So give yourself piece of mind and do something today. I hope that what I am doing will allow me to leave this world knowing that I did everything possible to make that next generation have a fighting chance. There are no excuses for not wanting to help. The human cost factor is too high, and we are all accountable to do something.

There are many organizations out there like ADI and the Alzheimer's Association that can help you. The Alzheimer's Association got me started in many ways with my new journey. It not only helped me, but it also had helped my wife as my caregiver. They have a website with many resources at http://www.alz.org. I encourage you to reach out today if you have not already. I would also encourage you to educate yourself.

Please join me and Go Purple on Sept. 21 for World Alzheimer's Month. I wear a purple Alzheimer's bracelet every day. And for those living with Alzheimer's, stop focusing on what you cannot do and join me in the battle to advocate. We still have so much to give, and we need to use our skills at our own speed. There is nothing to be ashamed of. We are counting on all of you.

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Over the past few years I have visited many websites that talk about Alzheimer's/dementia. The one thing that they all have in common is that not one of them encourages those of us who have the disease to continue to live and enjoy our lives. While I realize AD is a progressive and devastating disease we are still here, we are still alive, so treat us that way. Do not write us off.

I have always been savvy when it comes to finances and have always been a saver. One day I was speaking to a friend of mine who has AD, and I was telling her how I did not want to spend a lot of the money I had saved, because I wanted to leave it for my wife for that rainy day. My friend told me: "This is the rainy day. What are you waiting for?" She was right, and that's exactly how I started to think.

Just because we are living with AD, does not mean we should curl up and think our life is over before it actually is. There is so much more we can still do to enjoy life. Make wonderful memories with your loved ones before the days turn ugly.

One thing I had always wanted was to own a convertible, so we purchased one. I wanted to drive it down to the Keys in Florida. I have a friend out in California who also has AD. She has an RV and had planned to travel around the country before she declined and was incapable of driving anymore. One day she mentioned that she was going to the Keys and I decided to meet up with her. I also wanted to go deep-sea fishing to catch a big game fish. Don't get me wrong I am not person who goes fishing, but it was something I have always wanted to do. I had looked into it and it was very pricy, but it has always been on my bucket list. I think we all have a list if we stop and think about it.

I had no real plans; I just wanted to go out and drive my convertible, to feel the fresh air and admire the beautiful scenery and enjoy nice weather. I had a great time. I had a permanent smile on my face. I decided to stay with my friend in the RV for a week and visit various campgrounds along the way. That was a whole new experience, and some of the places we stayed at had fabulous views.

It was great to be out on our own, not having to rely on caregivers all the time. We had some difficulties, but we were able to manage on our own. It cost me a few extra dollars along the way because when I purchased something I could not remember the price in order to be able to compare, and sometimes I took the wrong road and had to take the turnpike, but these were minor issues. This road trip made me feel so much better about me. It was good for my mind; I came back stronger because of what I had achieved.

This disease has a way of making you feel like you are no longer cable of doing things on your own. You lose your self-esteem and your self-confidence. After this trip I felt great.

I did have to opportunity to go fishing. It was such a beautiful day with perfect conditions. The fish were not really biting to begin with but it didn't matter I was just happy to be on a boat again. Then I caught a fish that was about 10-12 inches long. Then I caught a barracuda that was at least 18 inches long, and then one over two feet long. Not to long after that I got the big one, a king macro that was 42 inches long! You should have seen the smile on my face. It is memories like this that we need to be making.

My friend in the RV has decided that she will not just use her mother's china and silverware on special occasions. Instead she took them with her in the RV. It gives her pleasure to use them every day. How many of you have a wonderful expensive hand bag or nice watch, which you only use on a special occasion?

Life is short; take pleasure in using those treasured items now. Start to create your own bucket list, don't just write it, DO IT! There are many wonderful memories that you can still make. Make them now before it's too late. Stop focusing on the negative. Make these last few years be the best of your life. You must do this now, before your mind no longer works.

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Since being diagnosed with Young Onset Alzheimer's Disease I have dedicated much of my time to its advocacy. Over the years I have worked with many people in different parts of the world, and through my experience I have come to realize that a major problem in reaching a cure is our actions. The way we treat not only those who have this disease but those who care for them, the focus on funding and research and the lack of communication and collective action. Although there are many brilliant people who are involved in Alzheimer's and Dementia action and research I feel that following some simple principals and plans we could bring about real change in the world of these diseases.

PARTICIPATION -- Patients, caregivers, family and friends must become advocates

FUNDING -- Unprecedented action from government and public sector is vital

TEAM WORK -- Organizations dedicated to fighting the cause must work together to reach a shared goal

RESEARCH -- It is imperative that professional medical research personnel work hand-in-hand with patients

LIVE -- Those with the disease must learn to live happy and fulfilling lives

PARTICIPATION -- The government wants to hear from us! I have been doing this a long time and I am told over and over again by government officials that they need to have a clear idea of the numbers of people with Alzheimer's so they can make the appropriate changes to policy etc. In order for the government to do something they need to see people with the disease. I know people have busy lives but if we want things to change, patients, caregivers and friends need to start taking action.

How can you help? By getting involved! Write to the people who can help -- government, health officials, and the press. But be mindful that you have to be persistent with these people, you have to fight. Can you imagine the impact if even a small percentage of the millions of people with dementia took a little time to have their say?

FUNDING -- We must look at other funding models for this disease. Unlike HIV and cancer, there are no survivors. Patients will continue to place a massive financial burden on the national economy; we need to be more proactive in how we fund research, care, medication and support for loved ones and caregivers.

How can you help? By writing to Congress, and the National Institute of Health. These people are responsible for prioritizing the distribution of funds to critical diseases -- Alzheimer's disease is not on the list; we need it on the list.

TEAM WORK -- There are many organizations out there hosting their individual fund raising programs, which is to be commended but the downside to this is that they still insist on operating independently on one another. These people need to see the bigger picture, they need to set aside their politics and differences, and come together as one and work together -- after all, they share the same goal don't they?

How can you help? Well we can stop complaining about these organizations and give them solutions and guidance. Together we have the power to bring about change. Keep informed of all the latest news and action, don't listen to gossip or rumor -- check the facts; do your homework.

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My name is Michael Ellenbogen. I am living with Alzheimer's disease. I spend almost every waking hour advocating for increased funding for research that will improve the treatment of this dreadful disease. In 2008, at the age of 49, I was diagnosed with Alzheimer's disease after struggling to get a diagnosis since my first symptoms began at age 39. There are more than five million Americans now suffering from this devastating disease.

The National Institutes of Health (NIH) funds research into critical and devastating diseases such as cancer and HIV/Aids. Yet there is much neglect and discrimination regarding the allocation of funds for research into Alzheimer's and related dementias. As a person who experiences the devastating impact of Alzheimer's disease every day I hope that research will lead eventually to postponing the onset or slow the progression of this disease, if not prevention and cure.

Currently, Alzheimer's disease only receives about $450 million for research from NIH, compared to more than $5 billion for cancer and more than $3 billion for HIV/AIDS. I am astonished at the lack of funding dedicated to addressing the number one health epidemic. Historically, leadership from the federal government has helped lower the number of deaths from major diseases such as HIV/AIDS, heart disease, stroke and many types of cancers. This past experience provides hope that increased efforts directed at Alzheimer's disease will be met with similar success.

There are many more Americans living with Alzheimer's than HIV; more funding is desperately needed. If we do not act now this disease has the potential to bankrupt this country. Money allocated today will have an enormous return on investment if it leads to the kind of successes obtained for other diseases.

If you have not yet been touched by this devastating and debilitating disease it's just a matter of time. I hope that my advocacy will help prevent future generations having to suffer my fate and that of many others. You can help by increasing NIH funding for research on Alzheimer's disease and other dementias.

I appeal to members of the House of Representatives, the Senate and the respective appropriations committees: Make the hard choices; increase funding for Alzheimer's disease. Do everything necessary to ensure that Alzheimer's disease gets the exposure, commitment and funding necessary to change the course of the disease before millions more Americans are affected.

My work as an advocate has provided opportunities to share my story on a national platform. I have provided public comment during meetings of the Advisory Council on Alzheimer's Research, Care and Services in addition to having my personal essay about overcoming the stigma of the disease featured in the Alzheimer's disease World Report 2012. I have also become a member of the Alzheimer's Association National Early-Stage Advisory Group, helping to raise awareness of the disease and provide insights on the most appropriate programs and services for individuals in the early stage of Alzheimer's and other dementias.

I hope that what I am doing now will allow me to leave this world knowing that I have done everything possible to make generations to come have a fighting chance. Do not forget these people or the future generations who will develop this disease. We face dying in the worst possible way.

As an Alzheimer's patient, I find it very difficult to perform tasks that I was once very capable of performing. Sometimes I am better than other times at doing the same task. People around me have accepted this fact and have tried to be very forgiving when I run into issues doing a task or when just trying to remember something. I really think that people around me should challenge me more at times.

For example, many of my doctors kept questioning me about whether or not I should still be driving. This of course was mentioned to my wife who also started wondering. I finally had a driving test a few years later. It was recommended that I no longer drive, even though I passed the test. I was almost borderline, but there was concern that I may not recognize when I become worse and could then become a danger. First of all, I have to tell you that the test they performed was not fair. I wonder how many regular people would be able to pass this test. The test also relied on me to learn new things in order to take the test. That is not fair since I have been driving the same vehicle all this time and nothing has changed. This constant talk about my driving has totally killed all of my self-esteem about driving. Every time I was in the car on the road with my wife, she constantly pointed out any mistakes I made, and her reaction time was much quicker than mine. I do realize I am a bit slower in my response time, but that is why I give myself more space between the other cars. Sometimes I am very far back or I just don't want to go around that slow car. There is nothing wrong with not feeling comfortable to go around that person. Let me do it at my speed.

I see many people on the road that I feel are so much worse than me and I wonder why they are still on the road, if I am supposedly so bad. I decided that I was going to drive to visit my daughter in South Carolina. I live in Jamison, PA in Bucks County. I was very scared to take this trip but I was trying to prove something to myself. It could have meant the end of my driving if I made a serious mistake along the way. I drove in one day, about 700 miles, with the help of a GPS in my car. The more I drove, the more I was starting to feel comfortable behind the wheel. A few other people on the road made serious mistakes along the way and I easily avoided a possible accident. This trip was the best thing I could have done for myself. I now have almost all of my self-confidence back and my wife no longer makes constant comments about my driving, unless I have a real issue. I have now had two close calls that required quick thinking and maneuvering to avoid an accident. In both cases, I was able to avoid the issues without my wife's comments. Again it may have taken me an extra second or two to react, but I was fine.

WHO'S THE THIEF

Who's the thief? Is there a thief? Why do we say that?

I have read so many stories about people living with dementia accusing their assistant -- I don't like the term caregiver -- of stealing their belongings. As a person with dementia I was hoping I would never become one of those people because I knew it could be very hurtful to those around me. However, as I continue to decline into this black hole that is Alzheimer's disease, I find myself trying to analyze these things to see if there is any truth to them or whether it is simply a misunderstanding. I am an ideal person to look at this issue as not only am I living with dementia but I am still able to share my thoughts on what may or may not be happening.

In the past year or so I have become very accusatory of my assistant/wife when I have not been able to locate something. In my mind I know I had put something in a certain location and it was no longer there. Most of the time it turned out that I was right and my wife had moved it somewhere else, so only she could locate it. I have also been told that I over react and am too quick to blame. That may be true; however, I am not sure why I cannot hold back those emotions and have more control. But the fact is I don't and it is not going to get better, it is more likely get worse as I see myself transforming into something I don't want to become.

Today I woke up and we had snow, so I needed to clear the driveway and footpath. When I went to the place where I keep my boots they were not there. As I searched in various places I kept saying to my wife that she had done something with them. She was helping me look and telling me she had not moved them. I just could not believe that I was unable to locate them. Then I seemed to remember that they may have had some cracks in them.

Although neither my wife nor I was able to find them I was not thinking that someone stole them, even though we'd had had many workers in the house in the last year and these are really great boots. Then all of a sudden I remembered that the manufacturer had sent me another pair. This made it more interesting because now I could not find TWO pairs of boots that are about 18 inches high and therefore not easy to misplace.

My wife kept insisting that she did not know where they were, and now I am beginning to think that they could have possibly been stolen especially since one pair had never been worn. But then I was thinking that maybe I threw one pair out and I am only looking for the new pair. This went on for a while as we both continued to search the house, which in itself has become a disaster zone from the way all of my items have been moved around. I finally convinced myself that they were stolen as there seemed no other explanation and I was not even sure how many pairs we were looking for.

I decided to give up and accept that they were gone and put on another pair of work boots that, although not designed for snow, would do the job. My wife continued to search all of her locations only to come up empty. Then she had an idea and went upstairs and promptly came down with two pair of boots, telling me that if I had put them away in the first place she would not have had to find a place for them. The mystery of the missing boots was over.

Although I was glad they hadn't been stolen, it was much easier to accept them as being stolen so I could justify why I was unable to find them. However, in my mind I blamed my wife since she was ultimately the reason I couldn't find them.

This disease really sucks in so many ways. I don't have a clear vision in my mind of things, just minute spots of memories. And I do mean a spots. I need to be able to magnify the spot in order to make sense of it but I am no longer able to do that. I no longer have groups of thoughts that I can make sense of, instead I have flashes of memories, which may be completely irrelevant to what is going on at that moment.

The only way I can describe it is the way a film works. To make a complete film you need hundreds of still shots per second to build up the picture on screen. Every once in a while I may have one still shot that lacks clarity and meaning before having it fade to nothing in a matter of seconds. So before you think the person with dementia is going crazy you should probably ask yourself if you or someone else moved it or got rid of it. There is something positive to be taken from a situation such as this: at least the person with dementia is still capable of thought; no matter how fragmented.

COPING STRATEGIES FOR DAILY CHALLENGES

Because of this situation, I feel even stronger than ever that it is important to be challenged. I know it may be easier for you to do something for an Alzheimer's patient because it's much quicker for you to accomplish the task. But I really believe that if you take the time to coach us along the way, we may do better in the long run. Believe me, I know it's got to be very aggravating at times, but I really appreciate it. It takes a lot of patience on the part of the helper. Everyone is different and you need to know at what point in time you should not push. It's also hard to be patient and not raise your voice at the person you are trying to help, because it will only make it worse.

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Daily Challenge: I have trouble remembering dates or things I need to do.

Coping Strategy: I use my computer and Microsoft Outlook to keep me straight by sending me reminders.

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Daily Challenge: Getting email using regular places like Google or Yahoo is a challenge for me.

Coping Strategy: My daughter had set up my Outlook to retrieve emails from all my accounts, and they arrive in the same format which makes it so much easier to read, and it allows me to use common folders.

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Daily Challenge: I forget to reply back to people's emails.

Coping Strategy: I flag them with a reminder date so it will automatically send me a reminder.

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Daily Challenge: Remembering passwords is a real challenge for me.

Coping Strategy: I have created a personal system that works great, I also rely on the computer to store many of them; however, it is a real challenge when the system does not work. I also keep files with the password information.

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Daily Challenge: I have trouble remembering the day, the month and the year.

Coping Strategy: I have a watch that displays all the information.

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Daily Challenge: I have an extremely complex TV, stereo and entertainment system, which requires many remotes and settings to be used.

Coping Strategy: I purchased a smart remote that allows me to put in all the steps at once, and press one button which takes care of sending all the commands to all the devices at once. It works great until it fails. Not sure how much longer I can maintain it. It's a bit involved

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Daily Challenge: Most of my lawn power tools are a struggle to use.

Coping Strategy: I do not think I have any coping method other then I keep trying different things until I get them to work. The problem is most are new, I find it easier to work with tools I am familiar with.

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Daily Challenge: When I drive I don't always feel as comfortable behind the wheel.

Coping Strategy: I sometimes need to take more precautions, and allow more distance between the car in front of me, and I may drive a little slower. I am also much more alert and focused during these times. It makes it hard because when I travel with my wife she wonders why all of sudden I drive slower, when normally I am flying. There is nothing wrong with going slower and being cautious.

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Daily Challenge: I don't do much of anything anymore.

Coping Strategy: The other day I was speaking with my neighbor who was waxing his car. This gave me some inspiration to want to do it. When people mention things to me it sometimes gives me what I need to take it to the next level.

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Daily Challenge: I purchased a camera; however, no matter how many times I read the manual I still don't seem to be able to understand how to use it.

Coping Strategy: Make sure you buy one that works completely automatic without needing to do anything. It is frustrating at times when you would like to do something on your own but just can't remember on how to do it. I have learned to accept it but I still try and fail.

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Daily Challenge: Spelling and forming sentences has become a real challenge.

Coping Strategy: I take advantage of using the computer to guide me in the correct spelling of a word. That is becoming harder because often it cannot figure out what I am trying to say. I also ask others to look things over for me, and to correct them for me. It's kind of frustrating for me because I am really concerned that I may not be able to do this much longer. I have seen a big decline in this over the years. I seem to notice this more than my other skills because I do it so often. While I am sometimes ashamed of sharing it with others, I still need to communicate so I try to not think about it.

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Daily Challenge: Sometimes when I want to do certain things I need to stop and think.

Coping Strategy: If I want to work on a project I will spend a lot of extra time trying to think of the best approach, this doesn't always help, but I tend to work at a slightly slower pace and am aware that things will go wrong.

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Daily Challenge: Finding past emails or letters

Coping Strategy: The computer is such a wonderful tool in so many ways. It allows me to search the entire computer as long as I can remember a word or two in the document I am looking for. While it may take a while I would not be able to survive without it.

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Daily Challenge: I can no longer do many things

Coping Strategy: I rely on my wife for many things nowadays. I am not sure if that is a coping strategy. When anything important needs to be considered, I ask her for her help. She does all the financials, and planning of most things. It is frustrating but I realize I cannot do it on my own.

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Daily Challenge: I get lost or cannot figure out how to get from one place to another. Maps are not easy to follow anymore even the ones that you print out from Google.

Coping Strategy: GPS! I cannot imagine what it was like for people like me before GPS and the computer.

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Daily Challenge: I fear that one day I will be lost or not be able to communicate with others due to a temporary stress or decline in my mental capacity.

Coping Strategy: I have chosen to not be concerned about that. I have a medical tag on me all the time that has my medical condition along with important contact information. I will continue to go wherever I want to go. I realize I will need to rely on others to get there. I will need to ask others for help frequently, and to ask multiple times so others don't send me down the wrong path. It will take me longer to get there, but I cannot let that stop me. Living in fear is also no way to live. I know there are good people that will help me when the time comes.

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Daily Challenge : Some things I do get me very frustrated

Coping Strategy: I no longer try to do those things so I do not get frustrated

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Daily Challenge: I write notes as reminders

Coping Strategy: I only write a few notes as if I have too many they just become overwhelming, and I would lose track of them because there are too many.

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Daily Challenge : I need more time to do things

Coping Strategy: I leave much earlier for meetings and places so I can allow for issues along the way.

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Daily Challenge: If I start to get frustrated doing something.

Coping Strategy: I move on to something else and then I try to come back and do it later.

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Daily Challenge: I fear I may get lost when I go to new and far places.

Coping Strategy: I take a cell phone with me.

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Daily Challenge: When I go shopping and lose track of the person I am with I sometimes start to worry a little bit.

Coping Strategy: I try to calm myself down and look for them. If I cannot find them I will try to stay by the door we came in so I can see them at that register

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Daily Challenge: I had trouble remembering which way to turn off the water in the garage for the hose.

Coping Strategy: My wife added masking tape with a marking pointing to off. No more issues. I have the feeling that over time I will need many reminders like this.

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Daily Challenge: I have trouble hearing people speak in loud places.

Coping Strategy: I try to not go to restaurants or other places where I will be put in that situation if I can help it.

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Daily Challenge: I can no longer use my video recorder.

Coping Strategy: I now have TiVo which makes it so much easier to do things. I still need some help, and my wife can help when I need it.

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Daily Challenge: I try to communicate with much smarter people.

Coping Strategy: I believe that my reaching out to and working with people who are very smart will delay the deterioration process.

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Daily Challenge: When I cut the grass, or do something that requires me to be a bit more stable on my feet.

Coping Strategy: I use a good pair of shoes, or even a low cut boot. It really helps me become more stable on my feet.

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Daily Challenge: I could get hurt while doing yard work.

Coping Strategy: I do not wear lose clothes or short sleeved clothes when doing yard work so I do not get hurt. Wearing shorts has already led to a broken foot because the pants leg got caught on the shifter. I also wear safety glasses. The problem I have is I don't always remember to take these precautions, or sometimes I think it's not necessary because I feel I will be careful if I am doing something that will just take a few minutes.

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Daily Challenge: Just the other day I was thinking in my head that I had to turn a grate on my fireplace, and I was thinking it may be hot.

Coping Strategy: Instead of being careful and just putting one finger closely to feel for heat, I just tried to touch it with three fingers to lift -- I got burned. How do you get a coping strategy for becoming stupid? It seems that my mind is not communicating with the rest of my body.

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ADDITIONAL COPING STRATEGIES:

All the people around me know I have AD, so most of them are keeping an extra eye out on me which is nice to know.

I try to keep some type of a schedule. I get up every day at the same time and try to eat at the same time. This kind of helps to do things like taking my drugs or other things. The second I change my routine you can be sure I will forget to take my drugs or do something else.

I double and triple check myself on many things I do.

I try to find some humor in my issues.

I ask people for help and ask a lot more questions of others

I take lots of breaks

I try to know my limits and will not start a task if I feel I cannot do it. Or I will have someone work with me.

A few months ago one of my friends mentioned that I am always talking about things related to Alzheimer's. While I know I spend my days advocating for this disease I did not realize I was that bad. Especially with those I am not trying to convince or influence. Although I appreciate the person telling me, it has really bothered me.

I started to give it some thought and tried to understand why and what I could do to change that. Not too long after that my wife made a similar comment, and that really hit home because their comments to me were so close together.

I realized many things have contributed to this. The most important is I no longer work and I feel like I am locked in this house; I really have nothing else to do. I wish I could still be working and doing something meaningful, but unfortunately my skills required to perform those jobs are no longer there because of my Alzheimer's. I use to go to work, I used to talk with others about many different topics, not just work but everyday world issues.

I have tried to have similar conversations with people about issues in the news, and I don't always have the right information since I don't always understand it all, and only retain bits and pieces. While there was a time I was a news junkie, now I can rarely recall many of the topics or even can tie other stories together in my mind so I can speak intelligently. I have recently found myself starting discussions that go south because I start out with part of a subject, and when we delved into it deeper I was at loss for information. I felt stupid because I could no longer speak about something I once found very easy. I used to be great about talking about political issues which really requires you to know what you are talking about, but now I can barely defend my position, and I do worse for even bringing the subject up, and then I feel bad because I was not able to point out the real issues so the person could really make a true assessment.

Since I have no real job I have made it my mission to advocate for Alzheimer/dementia. I try to keep my mind as engaged as possible. I also try to focus on things that most don't, like the high hanging fruit which is probably not the best for some on like me. That involves dealing with many high-level people. While I do good at first I don't always have the answers they require, and sometimes may come across as not knowing what I am doing. It is very frustrating knowing that in my brain I have the answers, but I just do not know how to retrieve the information needed to help me do what I need to do. Especially when I need it the most, I may remember later on sometimes, but it's too late. There was a time that I could retrieve everything to my favor and keep track of everything one person would say to me.

Then I finally realized I listen to the weather report multiple times a day and I never seem to know what the weather is supposed to be like, which I always used to know. I just do not seem to retain it.

I used to like reading the paper and I no longer do that because I have trouble retaining what I read or I don't remember how the story relates to something I read a few paragraphs back in the same article.

I used to have hobbies that I can no longer do because of the disease. I used to love boating and tinkering with electronics. I can no longer do any of these things. I rarely do anything around the house because I am afraid I will make it worse.

When I have conversations with others I do not always remember what we have spoken about in the past. I always hated it when you spoke to certain people and they keep repeating the same information you had spoken about in the past. I do not want to become one of them. There are so many discussions I want to have but I just can't because the lack of my ability and more. I miss that so much. To have an intelligent conversation with someone that can reply with meaningful information, where we both walked away with some new and interesting facts would be wonderful.

I was never one to blow my own horn, but I do that today so others can see some of the steps I have made in hopes that they feel they are willing to take risks and help me expand my mission.

I have accomplished some great things and I think that is what I may share with my friends. Maybe I am repeating myself and I don't know it. I keep trying to figure out how I can change, but I struggle because I do not know what to do. It seems that Alzheimer's has taken over my life and not sure what or how to change.

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American Society for Bioethics and Humanities Speech 10.22.15

My name is Michael Ellenbogen. I am living with Young Onset Alzheimer's Disease. My first symptoms came at age 39. I was not given the diagnosis until I was 49. I'm now 57. What I have to say applies to many dementia patients--especially younger ones who may live longer.

This is a very devastating disease. Until I got this diagnosis, I wanted to live as long as possible, like almost everyone else. Now my goal is different.

I still want to live life to the fullest, but only until it is my last opportunity to control when I die. The reason is that Alzheimer's will take away my ability to control my destiny. Alzheimer's will take away my ability to remember and my ability to carry out my plan. If my plan fails, I will be forced to have a prolonged dying because others either cannot or will not allow us to die, when we would want.

So I do NOT want a prolonged dying after I reach the stage of Advanced Dementia. Here's why:

I have several illnesses that cause me pain: gastric reflux, stomach pain, and stiffness at night. When I reach Advanced Dementia, I won't be able to ask for help or for pain meds, or to fluff my pillow to get comfortable so I can enjoy life or sleep. Instead, I will feel tortured.

Dr. Terman's term, "Dementia Fear" is not just a theoretical fear. It's a real issue. I can imagine myself lying there, uncomfortable all night long. Also, my pain gets worse when I have nothing to distract me.

It is important to me to be remembered for the person I was--NOT the person I am becoming. When my daughter was interviewed on FOX, she said, "My father was always so sure of himself. He's not anymore." That really hit me hard. My current condition is so far from what it was, and it will only get worse. I really enjoyed being a high level manager and being an important part of what was going on, being creative, being a resource for others and giving people advice ...so very different from who I am now.

Furthermore, I worked hard to have an enjoyable retirement. But if I lasted to the bitter end of Advanced Dementia, all the money I have saved would be spent on me, leaving nothing for my wife. That would not buy me anything I really wanted. It would just be time without quality of life. And it would not be fair to my wife.

I used to maneuver a boat with great skill, to navigate close calls, but now I can't enjoy this hobby anymore. I used to enjoy electronics as a hobby. Now if I touch anything, it falls apart. I might even electrocute myself.

I wake up every morning and have to remind myself that someday I will need to end my life. Whenever I decide, it will probably be too soon. But I worry that I will forget to actually do it while I still can, or if I do remember...by then, I may not be capable of carrying it out.

How will I know when "my last opportunity" will come? I won't, for sure. That's why I am certain that I will be ending my life too early. Or if my attempt to hasten my death fails, it might put me in a condition that is much worse. So I just hope my timing is not MUCH too early. And I hope it works smoothly.

I know a Young Onset Alzheimer's Disease patient whose friend promised to give him enough Oxycontin to kill himself. But then the friend changed his mind because he did not want to be responsible for the Alzheimer's patient dying. I can understand that, but now what are his options?

I am afraid of ordering drugs over the Internet. They could be FAKES or just make me sick and feel worse but not kill me. There are so many scammers these days. You can't trust... Who knows what hell could happen if I were to try this way.

I had a friend named Dena, another person living with Young Onset dementia. Probably Lewy Body disease. She took her own life. While I don't know what I don't know, when she first told me about her intent to die, a few months before she did it--I was really upset. I thought her dementia was not much worse than mine. Now I still wonder if she died too early, much earlier than she had to.

I know several people who are still doing reasonably well, but who now store in their home several tanks of Helium that could bring about their death.

As I get to know man Young Onset Alzheimer's patients, I would estimate half or more think about wanting to die while they still can, because they don't want to die slowly in Advanced Dementia. While this of course is NOT a valid survey, what I've found is this: The harder I try to get people to talk, the more they reveal their fear and share their wish for a plan they could trust.

One Alzheimer's patient I know died by inhaling car fumes in his closed garage. He taped a message to the steering wheel of his car. It said, "Sorry I had to do this now, but I was afraid to wait because I might forget that this is what I want to do."

We may never know how many people, like the man who left the note on the steering wheel, who feared not being able to wait longer, will have taken their lives when they would have waited if they had another choice that they could count on.

While Dr. Stan Terman has a very good system to die somewhat earlier--to stop being fed and given liquid... and while it's probably the best out there...it is still not good enough. The problem is that 20 percent or more of us will still be able to stick food in our mouths--even after we have lost much of our other abilities and we meet most of our criteria for Advanced Dementia.

To possibly move up the time, Dr. Stan Terman asked me to try thickened nourishment. I never would have tried it, if he hadn't recommended it. So I experimented with "Thick and Easy." Doctors prescribe this product to prevent choking on food and drinks so they don't go down the wrong way since the next thing that can happen is pneumonia. But have you ever tasted it? It's horrible.even when mixed with my favorite drink. Don't ever give me that stuff.even if my life depends on it. I'd rather die by dehydration. By the way, I added this statement to my Living Will.

Along these lines, I hope physicians and others get this message: Stop thinking of what can make me live longer when I reach Advanced Dementia. Instead, follow what I say now about what I really want. Listen to me. Remember what I ask for and let me die with dignity. Please!

I am revealing myself, my diagnosis, my wishes, and I am pleading with you: Please take action to change our laws. It may surprise you but a NEW law that will let us die when we want, will save our lives. We'll live longer. It will also lower our fears so we can spend the last few years of good living without this awful worry, that our last wishes will not be carried out.

I know many patients whose wishes were NOT followed because of incompetence or unwillingness on the part of their doctors. That absolutely must change so we can have confidence... otherwise some of us will kill ourselves when we can. The laws and Doctor's beliefs should not get in the way of what's so important to us.

Many right-to-die organizations have their own ideas on how one should die. And they do not get along with other similar organizations. To them I say: It is not about you or what your organization stands for. It's about the patients you say your organization is trying to help. Break down your silos. Figure out ways to work together to reach a better solution for this horrible problem and this devastating disease.

Thank you.


I. Kremer  |  01-20-2016

I serve as executive director of Leaders Engaged on Alzheimer's Disease (the LEAD Coalition). The LEAD Coalition is a diverse and growing national coalition of 80 member organizations [http://www.leadcoalition.org/who-we-are/our-members/] including patient advocacy and voluntary health non-profits, philanthropies and foundations, trade and professional associations, academic research and clinical institutions, home and residential care providers, and biotechnology and pharmaceutical companies. The LEAD Coalition is co-convened by USAgainstAlzheimer's and Volunteers of America. The coalition works collaboratively to focus the nation's strategic attention on Alzheimer's disease and related dementias and to accelerate transformational progress in: detection and diagnosis; care and support to enrich quality of life; and research leading to prevention, effective treatment and eventual cure. For more information about the LEAD Coalition, please contact me.

We all celebrate and are grateful to the Congress for the nearly 60% increase in NIH dementia research funding provided in the FY 2016 omnibus spending package. We are thankful to every organization and every advocate who made this possible. But we are mindful that far more vital science remains to be funded and that we have not yet seen commensurate progress in funding care and services for those already living with dementia and for whom the scientific breakthroughs will come too late.

For the past several years, I have said during the public comment portion of Advisory Council meetings that the National Plan needed to match the aspirational and transformative 2025 goal for biomedical progress with similarly aspirational and transformative goals for clinical care and long term services and supports, building on the remarkable work done by public and private sector agencies and millions of individuals. Today, with the presentation by the Alzheimer's Association, we have reached a tipping point. I would encourage the Council to move expeditiously to invite public comment on the recommendations being presented so that the widest possible cross-section of stakeholders and experts -- especially people living with dementia and their caregivers -- have an opportunity to offer support and suggest enhancements.

Today's agenda includes discussion of the proposed "Research Summit on Care and Services for Persons with Dementia and their Families." The summit aims to advance the research, translation, and scaling of the very programs and services that will help make real for people with dementia and their caregivers many of the recommendations from the Alzheimer's Association presentation.

These are just three among many examples of the transformative power of collaboration. I would encourage the Council to schedule presentations at your upcoming 2016 quarterly meetings three other vital collaborative projects: the Dementia Friendly America Initiative [http://www.dfamerica.org/]; the Global Alzheimer's Platform [http://globalalzplatform.org/], and the Accelerating Medicines Partnership Alzheimer's Disease Initiative [https://www.nia.nih.gov/alzheimers/amp-ad].

In closing, I offer my apologies for topics I have failed to address and I offer my thanks to others making public comments addressing such omissions. I offer my appreciation to Advisory Council members and staff who give of their minds and hearts beyond what words can express. I offer my hope to all those living with dementia and their loved ones that they will be heard, heeded, and healed through the work we all do together.


P. Fitzgerald  |  01-20-2016

The Program of All Inclusive Care for the Elderly (PACE program) is a proven care model that provides high-quality, community-based, integrated care to some of our nation's frailest, most vulnerable citizens -- those over the age of 55 who need a nursing home level of care but seek to remain in their own homes. Studies show that people receiving care from PACE organizations live longer, in better health, with fewer hospitalizations and more time living in their homes than those receiving care through other programs. PACE is an evidence-based program in which nearly half of the people who receive care and support have been diagnosed with dementia.

As a result of the PACE Innovation Act of 2015, which was passed by Congress and signed into law on November 6, 2015, the Medicare and Medicaid programs now have the authority to pilot the PACE model with new populations including people younger than 55 and those with complex care and support needs who do not yet meet their state Medicaid agency's criteria for needing a nursing home level of care. These pilots have the potential to give people with Alzheimer's, their families and their friends access to a care option that addresses the serious gaps in our current health and long term care delivery systems. The pilots would enable PACE organizations to offer high-quality, fully-integrated care that allows people with Alzheimer's to maintain their optimal health, receive much-needed services, and live independently in the community.

Not far from where we meet today, the lives of two individuals and their families provide compelling examples of the difference access to a PACE program could make through a pilot program:

Serving People Under the Age of 55: Jim G.

Jim G. is a 54 year old Virginia resident who was diagnosed with early-onset Alzheimer's disease. Although Jim was initially enrolled in clinical trials to combat his illness, he recently ceased all treatment as his memory -- and his health -- deteriorated. Jim tried to enroll in the local PACE program, but was unable to because he was not yet 55 and therefore did not meet the program's current age eligibility requirements.

Jim was hospitalized in 2014 for a lung infection caused by "silent aspiration", which occurs when the swallowing function is weakened by Alzheimer's. A once vibrant athlete, Jim lost almost 40 lbs. Initially, Jim stayed home alone during the day, where he was isolated and struggled with activities of daily living, such as personal grooming, household chores, and child care. Karen struggled to care for Jim and tend to her school-aged children, while also holding down a full time job, but eventually had to quit her job to care for him full time. Unfortunately, Karen discovered that his needs were more than she could handle. Following a psychotic break and a week as a psychiatric inpatient, Jim was permanently placed in a memory care unit near their home. Karen had to use "crowd-sourcing" to raise funds for Jim's treatment.

This heartbreaking situation might have been avoided had Jim been able to enroll in PACE. Jim could have received day-time support that would allow him to continue to live at home with his family. He could have received therapies to help him stay physically strong, and primary care to help avoid silent aspiration and other health complications. PACE has significant experience with dementia, and might have been able to avoid or better managed his psychiatric deterioration. And Karen and her family would have received much needed respite services, emotional and social support, and peace of mind, perhaps helping her maintain her employment.

Serving People At-Risk of Nursing Home Placement: Terry B.

In testimony before the District of Columbia's Council, Terry B. described her work as an enrollment coordinator at a PACE program as "the most rewarding job I ever had in my life. I was able to help older adults and their families find a solution to some very heartbreaking issues and could substantially see the huge difference this program made in their lives -- from being totally at the bottom of despair to living a full life and thriving in their final years."

At the age of 56, Terry was diagnosed with younger onset dementia, and has now reached the point where she can no longer work. She recently completed her term as a member of the national Alzheimer's Association Early-Stage Advisory Group, helping the Association provide the most appropriate services for people living with early-stage dementia, raise awareness about early-stage issues and advocate with legislators to increase funding for research and support programs.

Terry observed that she is "not yet ready nor qualified to need the PACE program, but when I do I know they will be there for me and my family." Through a pilot program, Terry and her family would be able to access the PACE program when they determine they need its support and integrated care rather than waiting until Terry meets the state's nursing home level of care criteria. This earlier access to PACE can support Terry's continued quality of life, in a home setting that also strengthens the caregivers in her life.

Providing Access to PACE for People with Alzheimer's

The pilots made possible by PACE Innovation Act of 2015 would help Jim, Terry and others like them. These pilots would allow CMS to test and adapt the PACE model for individuals under the age of 55 and those who are not yet in need of a nursing home level of care but whose care delivery systems and supports are being strained as they strive to maintain their quality of life. Specifically, the following are benefits that this model can offer to people with Alzheimer's, their families, and policymakers seeking to improve their care options:

  • Access to team based, disability competent care for an underserved, high cost population.
  • Improved care coordination with timely and accessible primary care reducing unnecessary emergency, inpatient and long term care utilization.
  • Reduced nursing home utilization enabling nursing home eligible individuals to live independently in the community.
  • Competent, consistent and quality attendant care services for activities of daily living.
  • Social network of care with innovative physical and virtual day programs to enhance independence and employability.
  • Extensive use of adapted technologies -- computing, telehealth, social networking, environmental controls, mobility -- to increase independence, provide enhanced abilities at reduced cost.
  • Significant savings to Medicaid and Medicare -- payments to PACE programs are less than Medicaid would pay for a comparable population in its other programs and PACE provides savings to the Medicare program.
  • Relocation of individuals from nursing homes into community settings by partnering with state and local housing organizations to fund development of accessible, affordable and safe housing.

By supporting pilots that allow for PACE to serve younger people with Alzheimer's and those who are struggling to live in their own homes, the Advisory Council can be assured that they are supporting a proven, cost-effective care model that will help achieve the goals of better care coordination, and higher quality of life.

Thank you for the opportunity to address the Council on these important matters.


S. Peschin  |  01-20-2016

I serve as president and CEO of the Alliance for Aging Research. Thank you for the opportunity to provide a public comment. I have two issues I want to cover today.

The first issue is President Obama's forthcoming FY 2017 budget, which I realize is already baked and will be released February 8, but I am putting in one last push for the record. The $350 million Congressional boost for FY 16 was much appreciated, but we need upward momentum and we need this Administration to make its last swing at bat big and bold. Our ask for FY 2017 is a $500 million increase over FY 2016 enacted funding for aging research across the NIH; and a minimum increase of an additional $400 million in Alzheimer's disease research at NIH over the FY 2016 enacted level.

The second issue is related to healthcare-associated infections, which the CDC estimates kill 380,000 residents in nursing homes, skilled nursing facilities, and assisted living facilities annually. I am talking about infections at the NAPA meeting because 1) nearly 2/3 of Medicare nursing home residents have Alzheimer's disease and other dementias and 2) because antibiotic-resistant, deadly types of diarrheal infections such as C. diff are skyrocketing in nursing home settings and they are a lousy way to die.

CMS included changes in infection prevention and control in nursing homes and skilled nursing facilities as part of its larger proposed "mega rule" to improve overall quality and safety. Unfortunately, the proposed rule on infections is too broad to make much of an impact. Without mandates for specific rules on antibiotic stewardship, infection surveillance, prevention, and control, many otherwise preventable infection-related illnesses and deaths will continue unabated.

Up to 70% of nursing home residents receive one or more courses of systemic antibiotics in a given year, yet studies show that anywhere from 40% to 75% of these antibiotics may be unnecessary or inappropriate. Harms from antibiotic overuse significantly threaten the health of nursing home residents. Yet, in its proposed rule, CMS gives no guidance about how facilities should perform antibiotic stewardship. CMS should mandate the CDC's evidence-based "Core Elements of Antibiotic Stewardship for Nursing Homes." This program would also provide state surveyors with guidelines to help them monitor effectiveness.

Another concern about the proposed rule is the lack of instruction for staff on how to conduct infection surveillance. Currently, all CMS-certified nursing facilities use the Minimum Data Set (MDS) for collecting information on infections that impact longer-stay residents. However, the MDS offers data only quarterly, it does not capture multiple infections, timing of infections, or any data on short-stay residents admitted from the hospital setting for rehabilitation.

For the last several years, 17,000 hospitals and other acute care settings have used the CDC's National Health Safety Network (NHSN) surveillance system to keep track of infections. CDC research shows that when healthcare facilities, care teams, and individual practitioners recognize infection problems and implement specific steps for preventing them certain infection rates can decrease by more than 70%. Nursing homes and skilled nursing facilities should be required by CMS to adopt the NHSN system for their infection surveillance.

Last, CMS should mandate all nursing home and skilled nursing facility staff who work directly with residents to get an annual flu vaccine. This one is a no-brainer--please do it.

CMS has a chance to prevent suffering for people with Alzheimer's disease and related dementias. As physician and author Atul Gawande writes, "Sometimes we can offer a cure, sometimes only a salve, sometimes not even that. But whatever we can offer, our interventions, and the risks and sacrifices they entail, are justified only if they serve the larger aims of a person's life. When we forget that, the suffering we inflict can be barbaric. When we remember it the good we do can be breathtaking."


M. Ellenbogen  |  01-19-2016

I have noted that there are two representatives for all non-federal NAPA Advisory Council categories. That is EXCEPT for what many perceive as the most informed category - 'persons living with dementia.' As a person who is living with dementia, I find this discriminatory and problematic. I've brought it up to many here including top management. Your lack of action contributes to the stigma we must deal with.

I have made multiple requests to dial in. At the last meeting you finally agreed to look into it. I asked this time and was denied. I protest this decision as you have effectively shut out my voice.

(READER: Don't say any anything for 30 seconds)

I do hope you make the proper allowances as per the recommendations of the ADA. A government agency said you must provide reasonable accommodations for me. That is all I ask for.


J. Lyons  |  01-19-2016

I am an author and care consultant who helps older adults find the care they need throughout the country. Most of my clients have some form of dementia.

For the past few years, I have attended the Advisory Council meetings. I've been intrigued and impressed by the process of coordinating among various government agencies - including State, Local, and Federal partners. I look forward to the next phase of the Plan, which will include additional programs to provide practical solutions for people with dementia and their caregivers. Below are some sample actions that would provide support to the continued development of such programs:

  1. Establish additional public/private sector partnerships to develop practical, implementable plans and solutions for people with dementia and their caregivers. This includes addressing medical, financial, legal, practical, family/caregiver, and housing needs.
  2. Expand the scope of public/private sector partnerships to include more private sector companies and caregiver organizations that have "boots on the ground" and provide care and support to people with dementia and/or their caregivers.
  3. Continue to identify and work with industry experts and thought leaders.
  4. Create an educated consumer base through developing and disseminating accurate and culturally sensitive education, training, and support materials.
  5. Identify and partner with programs that help to keep the caregivers healthy -- including cognitive and emotional health.

The above suggestions reflect my understanding that identifying and providing practical solutions requires multi-sector participation and coordination. I would be pleased to provide additional information as requested.


R. Louie  |  01-12-2016

You may have seen this, and I had tried sending it directly to L. Elam and Dr. R. Petersen, but this OpEd about appointing as Alz czar was published in the Seattle Times 12/30/15. M. Marquez on the NAPA Advisory Council, Sen. P. Murray and Sen. M. Cantwell, along with Rep. J. McDermott (all from my state of WA) have all been emailed the link, too.

http://www.seattletimes.com/opinion/appoint-an-alzheimers-czar-and-treat-it-like-aids-or-cancer/


W. Lum  |  01-07-2016

Alzheimer's disease and related dementias are a growing concern within the Asian American and Pacific Islander (AAPI) community. Age is considered the greatest risk factor for Alzheimer's disease and AAPI women have the highest life expectancy (85.8 years) of any ethnic group.i Barriers that prevent the early diagnosis and timely interventions and care of Alzheimer's disease and related dementias among AAPIs include: cultural beliefs and language, lack of awareness that contributes to stigma, and limited accessible and culturally proficient services.ii Further, many AAPI older immigrants may feel discouraged to access aging and healthcare services (including screening for dementia) for several reasons: unfamiliarity with medical practices, having to locate interpreters, and the fear of miscommunication that may lead to misdiagnosis and improper treatment.iii Language and cultural barriers prevent them from full participation to the U.S. healthcare system, and studies have shown that "linguistic discordance," or miscommunication between patients and practitioners, is an implication of health outcomes and quality of care.iv

The National Asian Pacific Center on Aging (NAPCA), which preserves and promotes the dignity, well-being, and quality of life of AAPIs as they age, respectfully requests that the Advisory Council on Alzheimer's Research, Care, and Services dedicate a council meeting to discuss (1) the effects of dementia on and (2) how to outreach to AAPI and other diverse communities.

Raising awareness of the impact of Alzheimer"s disease and related dementias on AAPI and other diverse communities is an important first step to ensure that AAPI elders and their families, regardless of language, cultural, economic, or other barriers, will have access to and equity in the service, benefits, and programs that are available to all American seniors. Thank you for considering this request.

  1. Administration on Aging. Serving Asian and Pacific Islander families. Home and Community-based services for people with dementia and their caregivers. http://www.aoa.acl.gov/AoA_Programs/HPW/Alz_Grants/docs/Toolkit5_AsianPacificIslanders.pdf
  2. Alzheimer's Association of Los Angeles Riverside and San Bernardino Counties. Asian and Pacific Islander Dementia Care Network Project. Phase 1 Focus Group Report. http://www.alz.org/national/documents/C_EDU-APIDementiaCare.pdf
  3. Clough, J., Lee, S., Chae, D., Barriers to health care among Asian immigrants in the US: A traditional Review.http://muse.jhu.edu/journals/journal_of_health_care_for_the_poor_and_underserved/v024/24.1.clough.html
  4. Ibid.


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2015 Comments

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DECEMBER 2015 COMMENTS

A. Hartz  |  12-11-2015

Even though I am a perfect candidate for randomized controlled trials of Alzheimer's treatments, I have been excluded from three different trials because of the same boiler plate language that is irrelevant to the quality of the study. Is there anyone that I could discuss this with?


NOVEMBER 2015 COMMENTS

M. Ellenbogen  |  11-11-2015

Hi Folks, The following is the completed version of the speech we gave at American Society for Bioethics and Humanities. This was shared with my legal team that has come to my rescue to help in this cause. Please feel free to share any of these links.

I would sure love to see the NAPA committee address this important issue. Many are so afraid to speak about it but many are dying because many don't. We know it happens for other diseases so why not give the people with dementia the same rights.

ATTACHMENT #1:

I took the recordings we prepared for the American Society for Bioethics and Humanities annual meeting last month, and edited them slightly. Then I took my PowerPoint slides and re-recorded my narrative presentation, improving the sound and clarity. Finally, I integrated all sections into a coherent whole.

This email gives you choices about where to begin; for example, you can start with a 32-second video; then view the whole 1 hour and 13 min video (perhaps in two or three sittings) and finally go back to review one or more of Michael's presentations--esp. his 4-minute call to action. Since some material is presented twice, the amount is really NOT overwhelming. I will be sending this email and link to many colleagues and some are members of listservs, which could further the goal of broad distribution. You can share this "public" YouTube video with others any way you want, including the easy sharing techniques that YouTube.com provides. We can also send excerpts and additions that focus on action items, in the future. I hope you agree this is a good beginning.

I also include a short OP/ED that captures the mission quickly.

I am open to discuss, respond to your comments, and to develop our working plan to further our mission. I'd like to schedule a video conference call when we find it convenient. In the meantime, I am available one-on-one.

YouTube LINK: https://youtu.be/8SvhK5Tr2Pw.

TITLE on YouTube:

Avoiding prolonged dying in Advanced Dementia. How healthcare professionals can help. Terman.10-22-15

DESCRIPTION on YouTube:

To prevent premature and prolonged dying and to reduce the suffering of patients and their loved ones who face dementia... These goals motivated Terman's & Ellenbogen's presentation.

S.A. Terman, PhD, MD--psychiatrist and bioethicist--is CEO and Medical Director of Caring Advocates.
M. Ellenbogen--Young-Early Onset Alzheimer's patient & former IT manager for a major business--is now among the world's most active dementia advocates.

The 7 steps healthcare professionals can take to help patients avoid prolonged dying in Advanced Dementia (and still avoid premature dying):

  1. Accept patients' great dread of Advanced Dementia;
  2. Warn patients this myth is dangerous: "If she can swallow, she must want to swallow." It can prolong dying;
  3. Help patients create specific Living Wills;
  4. Help patients implement several layers of strategies to compel others to honor their end-of-life wishes;
  5. Inform patients that Natural Dying (withdraw hand-feeding/drinking but always offer food and fluid)-if they depend on such help--is legal and moral;
  6. Inform patients how they can legally refuse thickened nourishment in advance;
  7. Support Michael's movement to make it legal to Withhold and Withdraw Food and Drinks (WWFD).

If patients reach Advanced Dementia without diligent Advance Care Planning, consider this alternate: "The Consensus of Substituted Judgment."

Why is this urgent? To prevent premature dying by uninformed or misinformed patients who suffer from the "Dementia Fear." To prevent unwanted prolonged suffering of millions.

Terman and Ellenbogen are dedicated to fulfilling Caring Advocates' slogan: "Plan Now, Die Later® to Live Longer."

TIME SCHEDULE:

0.00: Introduction. Why portions re-recorded.

2.21: (15 min. video) Ellenbogen reveals his personal story and some patients he knew. (He presented this speech "live" by internet without captions on 10-22-15.)

17.32: Why Advance Care Planning is so challenging for Advanced Dementia. (Terman's PowerPoint presentation).

24.51: (14 min. video) A tightly edited DEMO from Terman interviewing Ellenbogen using a decision aid tool to make "One Decision at a Time" to generate a clear Living Will specific for dementia, as well as for other terminal illnesses.

38.13: Why additional strategies are needed to compel others to honor patients' Living Wills. (Terman's PowerPoint).

50.12: (4 min. video) Ellenbogen explains his mission to legalize Withholding/Withdrawing Food and Drinks so patients need not die "too early."

54.13: Table compares Voluntary Stop Eating and Drinking; Withhold/Withdraw Food and Drink; Refuse Thickened Food & Fluid; Natural Dying; and Comfort Feeding Only.

56.01: Six Layers of Strategies to avoid prolonged dying in Advanced Dementia and to demand relief from unbearable pain.

57.04: Why is it reasonable to dread Advanced Dementia?

57.37: An alternative for loved ones who have lost capacity without prior adequate Advance Care Planning.

58.59: The goal of Caring Advocates: "Plan Now, Die Later® To Live Longer." A recommended video.

59.41: Summary for health care professionals: 7 ways to help

1.01.10: Q & A; Comments; Responses.

1.01.43: Bentley case follow-up since ASBH, 2014; How to resolve the conflict between honoring a past Living Will and acceding to a currently incapacitated patient's request.

1.02.57: What if family members insist their wishes--not the patient's--be honored? (Solution furthers one's "Right to Visit.")

1:04:37: Will these strategies work?

1.05.30: What if the patient actively demonstrates he wants to eat and drink?

1.09.52 to 1.13.46: What about considering patients' pleasure--which may make up for their suffering?

Note: 4 included videos can be viewed or reviewed separately:

  1. (Only 32 seconds): "Advanced Dementia patient--unable to complain--suffered unrecognized pain from second degree burns." https://youtu.be/-6FkR-9jhQ0
  2. "A strong plea for a timely, peaceful dying by Young-Early Onset Dementia patient, Michael Ellenbogen." (15 min): https://youtu.be/VJ6h3pmDPtY
  3. "An Advanced Dementia-specific Living Will. Michael Ellenbogen demos making one decision at a time" (14 min). https://youtu.be/i8HbZp9pbaI
  4. "Help us legalize the option to Withhold and Withdraw Food and Drinks for Advanced Dementia patients."(4 min) https://youtu.be/235GbrpRtdE
Other recommended videos:
  1. "Margaret Bentley" based on Terman's 2014 ASBH presentation, "Must we all die with forced hand-feeding in Advanced Dementia? Will others honor our Living Will?" (37 min) https://youtu.be/W1um3BVdhoc
  2. Living with Advanced Dementia-What is it really like for patients, loved ones, caregivers? Dec. 2014 (14 min) https://youtu.be/WXZAKtlE69s

ATTACHMENT #2:

Helping Dementia Patients Avoid Premature Death, San Diego Union-Tribune, 2015. [Available as a separate link: https://aspe.hhs.gov/sites/default/files/private/pdf/258521/cmtach-ME1.pdf]


M. Ellenbogen  |  11-05-2015

I have shared this idea with you and others in the past. No one ever seems to be interested it perusing it. Yet I see people struggling daily and the solution is so simple. I have now put it in more detail and in writing. I sure hope you can pull this off as this would be life changing to all those effected by dementia. I am more than happy to work with anyone on this.

ATTACHMENT:

Over the course of the last 6 years I have had the opportunity to see many sites that are geared to helping those impacted by dementia. So many times I see these folks struggle to get the help they seek. What I find even worse is that many of these people who are so desperate for information get bad or misleading information because people are willing to share their ideas with others. You have people discussing a topic they are unfamiliar with giving someone else recommendations based on their own experience or something they may have learned. What is so wrong is that we have no system in place to help these folks, which is frustrating because no one seems to want to create a system that will help all of those who use the Internet today. I have recommended this idea to many and no one seems to be interested in building a system which in my opinion would be a lifesaver to many. In order to build this system it would require IT folks to work closely with dementia experts along with caregivers and those living with the disease.

I see this as a very simple solution and it must be made available at a well-known site, such as AA or a government site. The system would be based on what I call the Helpdesk approach which is used by many IT organizations. When you call a helpdesk they need to ask you the least amount of questions so they can quickly route you to the proper department responsible for your issues. Their goal is to fix it on the first try but if not they do the hand off. I believe this system works very good if you know to ask the right questions and provide good answers that lead to solutions.

Here is an example on how I see this application helping those with dementia. It will need to be created like a flow chart with the right questions and to continue to drill down until you get to the answers the people are seeking. Today there are many websites and all very confusing and not even knowing where to go. Even when you are at a site that has all the information it is overwhelming for most to figure out what they need.

So this is how my idea would work. When you first come to the site it will have the first question. Who am I? You would then be given a number of choices such as: I am a caregiver, I am living with dementia, I am a medical person, I am with the press, I am a friend or family person of a person with dementia, or I am a business. You could have more or less and while these are not the right names this gives you an idea on how it works.

Based on your answer it will start to drill down to another level. Let's say you selected "I am a caregiver". That now brings up the following question. Why am I here? You would then be given a second set of choices such as: Crises, general education, what's in the future, resources, Emergency, and Support group. Again this can be longer or shorter based on the high level of the categories one can think of.

Now that you made a selection it will drill down to one more level. Let's assume you selected "Crises". It will now ask you to make another choice. What type of issue do you have? Now it is going down to the third level which will have many categories on topics. This must be much longer.

Some of those choices may be: Suicide, Swallowing, Falling, behavior issues, Wandering, grooming, sleeping, Activities, Legal stuff, Hospital, Assisted living centers, Products, resources, Help Line call in line, Medications, and Hospice. Again this list will be much longer.

Now some may drill down to one or two more levels but most will end at this level. This is where you will provide detailed answers to what they needed. This will be the most choice for the reason they came to this site. This should help them with the correct answers for why they are here. When they select titles of description it will give them all of the details on a specific subject.

Let's say you had selected "behavior issues". This will take you to only information related to issues for items related to deal with behavior issues only. It may include ways to deal with them, where to go to seek help. Different types of issues and possible solutions. Each area should have an option that says I do not see an answer for my issue. They need to always have a way for an answer.

I do believe much of the information already exist in databases that we can already use. Not all sites will have all the answers so there is a need to allow for the answer to be linked to another site.

There is absolutely no doubt that if we create this system it will have a huge impact to helping caregivers and others affected by dementia. This will lead to better quality of life to the individual with dementia but also a lot less stress to the caregivers. They will be able to get to the answers when they need them.


OCTOBER 2015 COMMENTS

S. Lubrant  |  10-31-2015

Are the 2016 dates available for the NAPA Council meetings?

ANSWER

Information on future meetings is available at https://aspe.hhs.gov/advisory-council-alzheimers-research-care-and-services#NextMtg.


M. Ellenbogen  |  10-29-2015

The following are my comments related to the 10/26/15 NAPA meeting:

First is related to the comments of S. Potters. While I understand the need to clarify the federal roles and constraints as it relates to the NAPA Plan, I believe it was not good to share that information with the existing and new members. By your comments you created a very low bar to the expectations we should be shooting for. While I do not know this I do believe the federal members should address the highest level possible to determine if they truly have the restrictions you clam to think you have as government employees. While I agree they do apply to you in your normal job, I believe as a member of the council that does not apply. I believe they added you to the committee to have your voice based on your knowledge and great insight and to be able to make the recommendations you may not be able to make in your government position.

I have been part of many committees and it is my belief the people who are selected all bring some skill set to the table that leads to creative out of box thinking. I would like to think that when president Obama decided to create this committee he had no limitations in mind. I would hate to think that you are working in this group knowing you are not allowed to be able to make recommendations you feel are actually necessary. If I was in that situation in that type of predicament I can assure you I would remove myself. I do believe more clarification is needed. I would hate to see this being the same situation as it was in January of this year and then realize t that you were able to go to Congress directly.

I must say I am very pleased that we finally have representation for those living with dementia. While that is great I do believe we need to have two people just like you have for the other categories. In this particular case it is even more important since we living with dementia do not perform at the same level of others. In my opinion you really need three to make up for two. This is such a critical role and we should treat it that way. A simple change was made to correct the oversight 2 years ago. Let's do that again and make it fair for those you claim to be supporting.

In the meeting you spoke about the List serve for NAPA. Is there a way to be added to that?

I also have a concern with how you may mark these projects completed. In my opinion, because you may have been able to do it one or two times in one or two states should not qualify as completion. While I don't know what the right number, it should be at least half of the states using your recommendations. It should also not be the same states for all of the projects. I see too many of these projects taking credit for what I believe is not a real true accomplishment.

I thank you so much for your willingness to look into using remote conferencing for our next meeting. I have a subscription to zoom and I am more than happy to set that up for you. I can accommodate up to 25 people at once. This includes audio and video. It is the simplest product out there. I am more than happy to take control of muting all and coordination to make it easier for you. It can be controlled by sending a email out to this who are invited to speak with the link. On your end it would need a connection to a PC which then connects to your big screen. All very easy and I am more than happy to work with your IT folks. I do this all the time to present around the world. And if that is too much for you then you can just use plain old telephone conferencing. In my case I was allowed to use the same line the committee members called in on. I did it many times and I was always respectful as others will tell you. You can always ask Helen.

While I appreciate you are trying to limit people from speaking too long after someone spoke so long at the July meeting, I do believe most of us did not overly abuse your rules. I think you should stop those people. What you did this time only made people and others think that it was not even worth making a comment. For me it created such pressure that I had difficulty in even being able to stay focused. We ended up doing all in 30 minutes leaving the 30 minutes of free time. I believe that was not fair. If you had more people speaking then I could see that; but that was not the case. I also believe priority should be given to those truly impacted by the diseases. Caregivers and people living with it. Not these organizations trying to get free air time like this is some time for a commercial. You know who I mean. So please reconsider this for our next meeting. I believed it worked fairly well in the past. I also think it is unfair to send comments to you before they are read because it takes away from our messaging to you. In some case items that may have been in my speech may not have been read if I knew what you said at the meeting. I was forced to read it like the part about dialing in. I would have removed it since you had addressed it. I do thank you for allowing me to sit down and giving me the extra minute. Standing at a microphone for me causes me problems because I need to place my paper down so I can follow the words with my finger. For me the words are already moving even when they are on a steady surface. The slight movement of the page movement would make it impossible for me to do it right.

My recent trip to NAPA was not what I expected. As you know HHS said I would be treated like everyone else. That was far from the truth. I arrived around 7:50 AM. I went thru there screening folks without any issue at all. To be honest with you I was surprised because my brief case was so over stuffed that I would have thought someone would say something. I went to the check in desk and as I was giving my identification I could hear little whispers to the security folks that this is the person or something like that. They gave me my green wrist band to get in. I went to the sitting area waiting to be picked up. I was the first one there. Others started showing up and sitting in my area when for the person to come and get us so we can be escorted to the meeting room.

When someone arrived I got up with the rest of the group to go with them. As I tried to go I was told I must wait there as I would need to go with someone else. I was hoping to get something to eat and drink before the meeting. I like to also unwind a bit as it is stressful for me to find my way to the meeting. I kept sitting there and 3 more groups went up without allowing me to go.

I asked multiple times and they said they were waiting for someone who was going to escort me only and they would be assigned to be with me all day. I voluntarily offered to strip down so they can check me out and I was told they don t need me to do that. I offered my huge brief case and they said did not care to see it. After 45- 50 minutes I was finally able to go. Mean while every group who went up was told I was unable to attend as many kept trying to get me to go up with them.

I was assigned an armed guard to follow me everywhere I went on the premises. I had even requested to speak with Patricia Long who is in charge of security. They made the request but she did not offer an opportunity to speak with me during the day.

As many folks said they believe this was about intimidation rather than true security concerns. I felt sorry for the guard because he was a very nice guy and was stuck in the middle of this issue. It caused me terrible stress and I forgot what I wanted to say to others as I had no time to speak with the people I intended to dialogue with.


P. Gordon  |  10-29-2015

Please add teleconferencing to your meetings, allowing more people with dementia symptoms the ability to participate.

As persons with great responsibility in the dementia field, you will be aware that most daily activities require more time and energy for persons with dementia symptoms - from getting dressed and hygiene to composing words into a sentence when speaking or writing. This time consumption highly influences travel abilities, even for those PWD (Persons With Dementia) who live nearby. Since many PWD cannot drive or engage in travel without assistance, physical presence in a conference often requires an assistant to take time off work in order to be available for support (it certainly does for me, as a person with dementia symptoms).

Please leverage basic technology and add teleconferencing to your meetings. Teleconferencing conserves time, energy, and funding, in order to allow greater participation by Persons With Dementia symptoms. Personally, I think hearing larger perspectives from PWD would be advantageous for the NAPA Advisory Council.


T. Buckley  |  10-23-2015

Please know your incredible commitment to families with Down syndrome in Flirida are making an enormous difference-have a wonderful weekend

ATTACHMENT:

Letter of support to: ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE AND SERVICE

I am the proud mother of Mr. D. Tringo. He is at your meeting today in person representing our family. It is hard to believe that 42 years ago I had him as a 20 year old young lady and was forced immediately to make a decision the Doctor posed; "we can have Willow Brook here in ten minutes-do you want to keep the baby?" I simply asked if he can cry when he is hungry and love me? The doctor said yes; and we went home.

February 3, 2014 Federal NAPA Advisory Committee Approves Recommendation 13

I am writing to thank all of you for your courageous decision on February 3, 2014 approving Recommendation 13:

HHS AND STATE LEAD ENTITIES SHOULD PARTNERTO ASSURE ACCESS TO THE EULL ARRAY OE LTSS FOR SPECIFIC POPULATIONS OE PEOPLE WITH AD INCLUDING YOUNGER PEOPLE.NON-TRADITIONAL FAMILIES.PEOPLE WITH INTELLECTUALDISABILITIES. SUCH AS DOWN SYNDROME. AND RACIAL AND ETHNIC MINORITIES WHO ARE AT INCREASED RISK OE ACQUIRING AD.

MY LIEELONC BURDEN OE CARE

For the past 42 years, I have not taken a vacation feeling it is my responsibility to always be by David's side providing his lifelong care. The early onset of dementia is almost too much to endure after providing lifelong care with fierce advocacy and now the accelerated pace of AD with Down syndrome. Preparing for this late battle with this insidious disease in David's life is especially painful since I just buried my Mom and Dad with Alzheimer's disease. I noticed the similar symptoms with David similar to my Parents but Doctors could not confirm the symptoms.

E. Long is simply the best

Our Lucan us Center executive director traveled to Washington D.C. on February 3, 2014 and provided public testimony with National Chair Dr. Janicki. Upon returningto Florida, we were all very excited about the promising news to prepare a high quality dementia capable system for our children that was centered on our family. Our Florida Dementia Capable Model gives the funding to dementia care coordinators that create the dementia care plan together with the family.

During our newly created caregiver support groups focused on the death of our child Dr. Buckley kept mentioning Ms. E. Long and K. Gordon guiding our specialized dementia capable system. Dr. Buckley would comment on their incredible knowledge, passion and always speaking and seeking our solutions and not simply restating the problem or their solutions within the aging world.

On April 30, 2015 Ms. Long came to Florida and attended the NTG/Lucanus unveiling of the NTG formal curriculum. Ms. Long is an incredible young lady with a heart of gold that spoke of her family member experiencing Alzheimer's disease. She listened to aging caregivers and one in particular sticks in my mind. A father told of scolding his daughter and being so frustrated after APO and her behavior specialist said she needs to control her behavior and the parents need to set stricter rules.

The Father then said that everything she is doing is consistent with her recent diagnosis Alzheimer's disease and now he feels so guilty listening to behavior specialist knowing his daughter had no control of the behavior symptoms. Ms. Long has taken our hopes and dreams for families to create person/family specialized dementia plans and made this a reality that all families deserve. We all speak of them often and acknowledge with a smile they are simply the best and listened to our every wish.

Your support of the Lucan us Center has changed the lives for thousands. David is fully engaged in all Healthy Brain activities and both David and I just sang together as Sonny and Cher in a local talent search. I truly believe David going to Lucan us and adherence to Healthy Brain principles is the reason he is so sharp and active today.

Thank you for creating Alzheimer's respite and now my husband and I took our first vacation in over 42 years to Charleston, SC. David had only vacationed with my husband and I for the past 42 years. David chose to go with his other family, the Buckley's. Tom and Kathy took David to New York City for 5 days and then to Tallahassee advocatingfor families with Down syndrome and Alzheimer's disease. David had a wonderful time with his other "Mom and Dad' and really enjoyed advocating for others in need.

As a Mom, I could never thank you for all you have done for David and our family facing thisinsidious disease. It is hard to believe that just a few months ago our hopes and dreams were crushed when the local Alzheimer's Disability Resource Center chose not to provide Alzheimer's supports to people with Down syndrome after repeated request. The Lucanus Center and family's partnered with Florida SenatorSobel to sponsor the Florida legislature creating the Alzheimer's pilot for Intellectual Disabilities and Down syndrome. The Florida legislature 2015 appropriated $100,000 to the Lucanus center to create the Florida Alzheimer's waiver for intellectual disabilities and specifically Down syndrome.

On behalf of all families in South Florida with a family member with Down syndrome and Alzheimer's disease, we are grateful for your leadership and your incredible ambassador of hope E. Long. We vow to continue working endless hours until all Americans with Down syndrome and Alzheimer's along with their aging care giver are provided with high quality person centered dementia services and supports.


E. Bryan  |  10-23-2015

Please teleconfrence!


M. Ellenbogen  |  10-23-2015

Pleased add this subject to the NAPA agenda and planning. We can save lives with the proper plans in place. This is very important for those living with dementia. We must have a dialogue about this. This is all public information now.

ATTACHMENT #1:

Yesterday was the kickoff for my speech at the American Society of Bioethics and Humanities conference. I hope this will be the beginning of change. I will need the help of many to bring this change. Please share this with all of your team and members. A full recording of the live session will be out in the next week. I hope this is something you all will embrace. We need to be speaking about this if you want to help people with dementia. Thanks

Also attached: transcripts of Michael's 14 -min general presentation and 4-min presentation on changing the law.

  1. This 14-minute video features M. Ellenbogen, who explains why dementia patients need to be sure that the laws will allow them to avoid a prolonged dying in Advanced Dementia. https://youtu.be/VJ6h3pmDPtY
  2. Another 14-minute video features M. Ellenbogen demonstrating how "My Way Cards" can help a person living with dementia to complete Advance Care Planning using a decision aid tool. It's title is: "A Young Onset Dementia patient demos the 'My Way Cards' to generate a Living Will for dementia." https://youtu.be/i8HbZp9pbaI
  3. This 4-minute video explains why Michael wants the laws to change so that WWFD (Withhold and Withdraw Food and Drinks) will be legal. https://youtu.be/235GbrpRtdE

ATTACHMENT #2:

M. Ellenbogen 10-9-2015 interview with S.A. Terman, Ph.D., M.D.

I am living with Young Onset Alzheimer's Disease.

My first symptoms came at age 39. I was not given the diagnosis until I was 49. I'm now 57. What I have to say applies to many dementia patients--especially younger ones who may live longer.

This is a very devastating disease. Until I got this diagnosis, I wanted to live as long as possible, like almost everyone else. Now my goal is different. I still want to live life to the fullest, but only until it is my last opportunity to control when I die. The reason is that Alzheimer's will take away my ability to control my destiny. Alzheimer's will take away my ability to remember and my ability to carry out my plan. If my plan fails, I will be forced to have a prolonged dying because others either cannot or will not allow us to die, when we would want.

So I do not want a prolonged dying after I reach the stage of Advanced Dementia. Here's why:

I have several illnesses that cause me pain. Gastric reflux, stomach pain, stiffness at night. When I reach Advanced Dementia, I won't be able to ask for help or for pain meds, or to fluff my pillow to get comfortable so I can enjoy life or sleep. Instead, I will feel tortured.

Your term, "Dementia Fear" is not just a theoretical fear. It's a real issue. I can imagine myself laying there, uncomfortable all night long. Also, my pain gets worse when I have nothing to distract me.

It is important to me to be remembered for the person I was--NOT the person I am becoming. When my daughter was interviewed on FOX, she said, "My father was very competent, the 'go-to' person in his company, but he is no longer that way. That really hit me hard. My current condition is so far from what it was, and it will only get worse. I really enjoyed being a high level manager and being an important part of what was going on, being creative, being a resource for others and giving people advice... so very different from how I am now.

Furthermore, I worked hard to have an enjoyable retirement. But if I lasted to the bitter end of Advanced Dementia, all the money I have saved would be spent on me, leaving nothing for my wife. That would not buy me anything I really wanted. It would just be time without quality of life. And it would not be fair to my wife.

What hobbies did you, and do you still enjoy?

I used to maneuver a boat with great skill, to navigate close calls, but now I can't enjoy this hobby anymore. I used to enjoy electronics as a hobby. Now if I touch anything, it falls apart. I might even electrocute myself.

I wake up every morning and have to remind myself that someday I will need to end my life. Whenever I decide, it will probably be too soon. But I worry that I will forget to actually do it while I still can, or if I do remember by then I may not be capable of carrying it out.

How will I know when "my last opportunity" will come? I won't, for sure. That's why I am certain that I will be ending my life too early. Or if my attempt to hasten my death fails, it might put me in a condition that is much worse. So I just hope my timing is not MUCH too early. And I hope it works smoothly.

I know a Young Onset Alzheimer's Disease patient whose friend promised to give him enough Oxycotin to kill himself. But then the friend changed his mind because he did not want to be responsible for the Alzheimer's patient dying. I can understand that, but now what are his options?

I am afraid of ordering drugs over the Internet. They could be FAKES or just make me sick and feel worse but not kill me. There are so many scammers these days. You can't trust. Who knows what hell could happen if I were to try this way.

I had a friend named Dena, another Young Onset dementia patient. Probably Lewy Body disease. She took her own life. While I don't know what I don't know, when she first told me about her intent to die, a few months before she did it--I was really upset. I thought her dementia was not much worse than mine. Now I still wonder if she died too early, much earlier than she had to.

I know several people who are still doing reasonably well, but have several tanks of Helium that could bring about their death stored in their home.

As I get to know many Young Onset Alzheimer's patients, I would estimate half or more think about wanting to die while they still can, because they don't want to die slowly in Advanced Dementia. While this of course NOT a valid survey, what I've found is this: The harder I try to get people to talk, the more they reveal their fear and share their wish for a plan they could trust.

One Alzheimer's patient I know died by inhaling car fumes in his closed garage. He taped a message to the steering wheel of his car. It said, "Sorry I had to do this now, but I was afraid to wait because I might forget that this is what I want to do."

For myself, I hope my plan works so I won't be forced to die slowly, than I would want. It is bad enough that I must deal with the mental anguish of living with dementia. Every day, I have frustration, confusion, anger and I hate what I have become. And it only gets worse.

Recently, a salesman came to my front door and am so short-fused that I kept yelling at him, on and on and on. I really rip into people for the littlest thing. Later that same day I couldn't even remember what set me off. Bottom line: I do not like what is happening to me, the person I am becoming. It's bad now, and it will only get worse. And from what I have been reading, I have the kind of personality that will really cause problems as my dementia gets worse.

In addition, I must also burden myself daily about WHEN I should end my life--which I don't even like thinking about, but I must keep it fresh in my mind so I don't forget it. This makes life much less enjoyable living.

If the laws changed, I would not have to live this way. I wish we had a system that would allow me to live my life without worries so I could be sure--when I meet my specific criteria--I will no longer be forced to die slowly. I want to know that others would follow my previous directions that I stated in my Living Will and recorded on video--when my mind was sound.

How would I like to die and when? When I reach my criteria in my Living Will, give me a lethal cocktail. But our society and medical community are not ready for this. Yet I still ask: Why must I dehydrate for two weeks when the end result is the same, when I will die anyway? I will not only suffer more but will put my family with even more pain. Why should it be this way? I wish I could have one last great meal with them but I can't. If you were in this situation, wouldn't that make sense to you? Right now, I am already dying very slowly from Alzheimer's dementia, why must these thoughts also torture me? My dog died better than that.

I think the answer is that the system is absolutely broken. Our laws and our physicians just can't meet this need. And it affects so many people. As I said, maybe half of younger dementia patients will admit they want to die before they reach Advanced Dementia and that they worry a lot about this--if you can get them to talk about what they really feel.

Don't get me wrong. I am not saying that dying instead of living in Advanced Dementia is for everyone. It's only for those who said they made the decision to die while they were still competent. Physician-Assisted Dying can allow patients to die, but only competent patients. Why can't my wish be honored? I don't understand. If I decide, that is, make up my mind when while it still works, why must my mind still work just before I want to die?

So I want people like you--members of the American Society for Bioethics and Humanities--to help come up with a solution for me and people like me. We really need your help to have a choice, to live better and longer.

If you and others take a blind eye to our additional source of suffering, more people will worry and will suffer, and some will take their lives much, much early than they need to. We may never know how many people, like the man who left the note on the steering wheel, who feared not being able to wait longer, will have taken their lives when they would have waited if they had another choice that they could count on.

While Dr Stan Terman has a very good system to die somewhat earlier--to stop being fed and given liquid... and while it's probably the best out there... it is still not good enough. The problem is that 20 percent or more of us will still be able to stick food in our mouths--even after we have lost much of our other abilities and we meet most of our criteria for Advanced Dementia.

To possibly move up the time, Dr Terman asked me to try thickened nourishment. I never would have tried it, if he hadn't recommended it. So I experimented with "Thick and Easy." Doctors prescribe to prevent choking on food and drinks they don't go down the wrong way since the next thing that can happen is pneumonia. But have you ever tasted it? It's horrible--even when mixed with my favorite drink. Don't ever give me that stuff--even if my life depends on it. I'd rather die by dehydration. By the way, I added this statement to my Living Will.

Along these lines, I hope physicians and others get this message: Stop thinking of what can make me live longer when I reach Advanced Dementia. Instead, follow what I say now about what I really want. Listen to me. Remember what I ask for. Please!

I am revealing myself, my diagnosis, my wishes, and I am pleading with you: Please take action to change our laws. It may surprise you but a NEW law that will let us die when we want, will save our lives. We'll live longer. It will also lower our fears so we can spend the last few years of good living without this awful worry, that our last wishes will not be carried out.

I know many patients whose wishes were NOT followed because of incompetence or unwillingness on the part of their doctors. That absolutely must change so we can have confidence... otherwise some of us will kill ourselves when we can. The laws and Doctor's beliefs should not get in the way of what's so important to us.

Many right-to-die organizations have their own ideas on how one should die. And they do not get along with other organizations. To them I say: It is not about you or what your organization stands for. It's about the patients you say your organization is trying to help. Break down your silos. Figure out ways to work together to reach a better solution for this horrible problem and this devastating disease.

ATTACHMENT #3:

Here is how an Young-Onset Alzheimer's Dementia patient expressed his personal wish for WWFD and his mission to change the laws to make WWFD legal:

After I reach the advanced stage of dementia, I do not want a prolonged dying.

I do want others to implement the "WWFD protocol" to Withhold and Withdraw Food and Drinks.

Implement the WWFD protocol

  • if I have severe suffering myself
  • or if I am imposing severe burdens on others.

Allow me to die from my underling disease

  • even if my risk of aspiration pneumonia is not (yet) high; and,
  • even if I can still eat and drink without help.

Note: I will still depend on others to buy, cook, prepare and place food and fluid in front of me or in my hands.

I want my health care providers, proxies/agents, and others to follow this three-step protocol:

  1. Compare my current condition with the conditions for which I previously made treatment decisions that I expressed in my Natural Dying--Living Will.
  2. If those whom I trust to make healthcare decisions for me agree that my current condition includes two or more for which I decided I wanted Natural Dying, and--if they agree that these conditions are causing me severe personal suffering or severe burdens on others-- then I would want them to implement this final step:
  3. Implement the WWFD protocol.

Also make sure I receive all the Comfort Care I need to have a peaceful dying.

I realize that WWFD requires 2 or more severe conditions.

  • I chose "2" rather than more, because I want to qualify for WWFD as soon as possible.
  • I will sign this form in front of qualified witnesses or a notary so it will be a legally valid part of my Living Will.

But that does not mean WWFD itself will be legal.

I don't want this statement to give anyone false hope.

I used the words, "would want" because I do NOT want my health care providers or caregivers, whether related to me or not, to implement WWFD ... unless when this decision must be made-- this end-of-life option is considered legal in my jurisdiction.

To my knowledge, NO state has legalized WWFD, and No legislative body is even considering changing the law to make WWFD legal.

My mission is to change the law. I need a lot of help. That is why I revealed my diagnosis and volunteered to address the American Society for Bioethics and Humanities.

I will need many activists to help me change the law so WWFD will be legal. Today marks the beginning of this important campaign. Our goal is to reduce the suffering of millions.


W. Roulis  |  10-21-2015

I have Lewy Body Dementia & the ability to teleconference is a necessity- no one knows better than us going through it!!!


M. Janicki  |  10-21-2015

Along with my colleague, Dr. S.M. Keller, we are the Co-Chairs of the National Task Group on Intellectual Disabilities and Dementia Practices -- the "NTG". The NTG is a national group affiliated with the American Academy on Developmental Medicine and Dentistry and the University of Illinois's Center on Developmental Disabilities and Health. We are a membership organization supported by a range of formal and informal organizations and are made up of more than 250 members -- representing a broad range of interests focusing on advocating for solutions to issues faced by adults with intellectual disabilities affected by dementia -- and their families and formal caregivers. The mission of the NTG is multifaceted:

  • Promote adoption of a specialized screening instrument and process.
  • Define ways to assess 'cognitive impairment' as part of the annual wellness visit requirement under the Affordable Care Act.
  • Develop practice guidelines for health and social care practitioners.
  • Promote 'best practice' service models and systems of care that meet the unique needs of individuals with disabilities and their caregivers.
  • Aid families by providing information and aids for coping with dementia and its challenges.
  • Assist in adoptions of standards of care.
  • Institute public education and training programs.
  • Collaborate with national and regional organizations in public education, legislative and services development campaigns.

The NTG also has been working in concert with the activities emanating from the National Alzheimer's Project Act (NAPA) to raise awareness within the context of NAPA of the needs of adults with intellectual disabilities affected by dementia, and their families and other caregivers. Over the past five years we have watched the Council address a number of issues affecting people with dementia in general, and have been pleased by the actions cited in the Plan related to intellectual disabilities.

We appreciate the work of the Advisory Council and welcome those of you who are new members and trust you will help address the continued mission of the Council and its work as per the National Plan to Address Alzheimer's Disease. With this in mind we would like you to know why focal consideration needs to be given to people with intellectual disabilities.

  • Even as most adults with intellectual disabilities are affected by forms of dementia at the same rate as other adults, adults with Down syndrome are at extreme high risk for dementia and most show early onset and compromised longevity.
  • Early identification of signs and symptoms of cognitive impairment and dementia among adults with intellectual disability is an important first step in managing the course of the disease and providing quality care -- but typical assessment and diagnostic measures are not appropriate for this population due to variability of cognitive abilities.
  • Many organizations providing community supports are still unprepared to adapt their care practices for older adults who are experiencing decline due to dementia and are in great need of technical assistance and access to creative models of community care.
  • A large number of older-aged adults with intellectual disabilities live with their families and dementia-related impairments increase the challenges for, and oftentimes overwhelm the capacities of, older caregivers.
  • An emerging model of dementia-capable' out-of-home care is the use of small community-based group homes and more technical assistance is needed to help providers adapt their care practices to make optimal use of this model.
  • Supportive education, training, and services can help caregivers minimize fatigue and prevent burnout, and help maintain affected older adults in community settings, but more coordinative and specialized education and training is needed.
  • Collaborative efforts at the local level, among disability, aging, and health providers can be effective in adapting services and supports to aid adults affected by dementia, as well as their caregivers -- and more emphasis on such collaboration is needed at the state and local level.
  • With appropriate services, adults with intellectual disabilities affected by dementia can continue to have quality lives in community settings and because of the presence of such settings the unnecessary institutionalization of older adults simply because dementia is present can be avoided.

In today's remarks, on behalf of Dr. Keller, myself, and the NTG, we would like to offer our appreciation to the Council and its federal partners in their on-going efforts in recognizing the special needs of aging adults with intellectual disabilities affected by dementia and responding to the issues we have raised over the past five years. We are particularly appreciative of the results of the current series of awards by the Administration on Community Living for the Alzheimer's Disease Initiative grants and the special consideration given to intellectual disabilities, and to the Health Resources and Services Administration (HRSA) for its multiple awards under the Geriatric Workforce Enhancement Program (GWEP) and its willingness to draw from the NTG's national education curriculum on dementia and intellectual disabilities so as to assure that issues related to intellectual disabilities will be covered in the education and training to be undertaken by the awardees. We are also very appreciative of the National Institute of Health (NIH) for its efforts to seek out solutions leading to the early identification of Alzheimer's disease in people with Down syndrome and other intellectual disabilities via the funding of two major multi-site studies designed to identify biomarkers among adults with Down syndrome, as well as support other dementia-related research among persons with lifelong disabilities.

Lastly, the NTG would like to offer its support to the pending proposal to establish a dementia-related caregiving summit among the federal partners and non-governmental organizations, and looks forward to the inclusion of issues facing caregivers of aging people with intellectual disabilities affected by early, mid-stage, and advanced dementia.

We thank the Chair for this opportunity to address the Council and look forward to continued fruitful collaborative endeavors designed to achieve the goals of the National Plan by 2025.


E. Sokol  |  10-21-2015

  • In conjunction with November being National Alzheimer's Awareness Month, AFA will be holding National Memory Screening Week from November 1st - November 7th.
  • NMSW grew out of an earlier AFA initiative, National Memory Screening Day.
  • During NMSW, sites across the U.S. offer free, confidential memory screenings to the public and distribute educational materials about memory concerns, dementia, caregiving and successful aging.
  • A memory screening is a good conversation starter about memory concerns and brain health.
  • Memory screenings are a significant first step toward detection of memory problems.
  • Some memory problems can be readily treated, such are those caused by vitamin deficiencies or thyroid problems. Other memory problems may result from causes that are not currently reversible, such as Alzheimer's disease.
  • Memory screenings, however, are not a diagnosis.
  • Individuals who score below the normal threshold or who still have concerns about their memory are encouraged to follow up with their physician for a thorough evaluation.
  • Moreover, all of the NMSW materials clearly emphasize that memory screenings are used as an indicator of whether a person might benefit from an extensive medical exam, but that they are not used to diagnose any illness or to replace an exam by a qualified healthcare professional.
  • We encourage all listening to the NAPA meeting or anyone who has concerns about their memory to visit a memory screening site.
  • More on NMSW can be found at: http://www.nationalmemoryscreening.org/.

L. La Bey  |  10-20-2015

I am writing to request you that you utilize the simple technology readily available to allow all parties to participate in your meetings. As a connection leader in the dementia industry, I have learned to embrace technology to allow the voices of all to be heard. The benefits of doing so have been overwhelming positive.

I am a firm believer until we become a society open to hearing from all stake players: those diagnosed, family and friends caring for loved ones, healthcare professionals, researchers, community providers, government leaders and more we will never truly know the needs nor will we be able to develop an effective plan of attack to improve life with dementia.

I respectfully beg you to implement teleseminar access not only for equality but for expanded engagement and knowledge base.


D. DuVall  |  10-20-2015

I'm the Chief Operating Officer of the National Certification Board for Alzheimer Care (NCBAC). For over 11 years, our organization has been at the forefront of setting benchmarks in dementia care for direct care workers and the professionals who train them. We are the only organization that offers dementia care certifications based on the healthcare licensure model.

I want to offer my welcome to the new members of the Council, and thank ALL the members of the Council for their dedication. While much of the attention nationwide is placed on finding a cure for Alzheimer's disease, I want to ask this Council to concentrate on the CARE of people with ADRD and their families. As many of you know, my father died from Alzheimer's disease. It was a 13-year gut-wrenching and tormented journey that devastated our family.

In my opinion, the care of people and their families going through this fatal disease doesn't get enough attention. Compared to research dollars, resources for proper care and support of people with this disease is relatively non-existent. Ask a family what they need most to help their loved one, and their number one concern is NOT finding a cure. In fact, a recent survey conducted by the University of Buffalo found that the #1 concern was money and help to support caregiving, followed by financial aid and other help for long term care and aging in place. Research dollars ranked lower than these concerns. According to the study published by the University, in 2014, "hundreds of millions of federal dollars were spent on science and drug development," but only "$10 million to care, services, and education". The author continues, [That] "represents less than $2 per person for care-related support...Are these the priorities that people and families living with dementia want? Their voices have not been heard over the clamor for research dollars." I know that this Council has advocated for long term support and services (LTSS) in the past, but the families have told us that this is what they need most!

One area that needs more attention on the national and state level is training of the direct care workforce. Dementia education is greatly lacking in most states. I believe federal dollars should be devoted to making sure that everyone who provides care to people with ADRD -- whether they work in skilled nursing facilities, hospice, adult day care, assisted living and ESPECIALLY home care -- should be required to prove their competence in providing care. CMS has highlighted competency training in their proposed regulations for nursing facilities; I am told that they will provide specific guidelines for dementia care.

I know that we all want to see the day when we don't have to have these meetings. However, I think that day is far into the future. I believe that the work that this diverse group of individuals, along with those of us who work daily to advocate for proper care and support for people with Alzheimer's and related disorders AND their families, will help secure more resources from federal, and thereby, state governments to make the lives of these individuals more manageable.

Thanks, again, for your dedication to the fight for the millions of people suffering from ADRD. And, yes, I said, SUFFERING. I know that in certain circles that is not politically correct. However, if you have been through this with a loved one, that is indeed what you, your family, and more importantly, the person who you love experiences. Yes, they LIVE with Alzheimer's, but we all SUFFER the disastrous effects of this disease and we should never forget the physical, financial, and emotional toll it takes on all of us.


I. Kremer  |  10-20-2015

Good afternoon. I serve as executive director of Leaders Engaged on Alzheimer's Disease (the LEAD Coalition). The LEAD Coalition is a diverse and growing national coalition of 77 member organizations [http://www.leadcoalition.org/who-we-are/our-members/] including patient advocacy and voluntary health non-profits, philanthropies and foundations, trade and professional associations, academic research and clinical institutions, home and residential care providers, and biotechnology and pharmaceutical companies. LEAD is co-convened by the Alzheimer's Foundation of America and USAgainstAlzheimer's. The coalition works collaboratively to focus the nation's strategic attention on Alzheimer's disease and related dementias and to accelerate transformational progress in: detection and diagnosis; care and support to enrich quality of life; and research leading to prevention, effective treatment and eventual cure. For more information about the LEAD Coalition, please contact me.

Congratulations and best wishes to the newly appointed members of the Advisory Council. We look forward to you building on the strong legacy of your predecessors, forging even more productive bonds with your colleagues, and being the catalysts for truly transformational progress in the quality of life for people facing dementia and the scientific pursuit of a world without dementia.

For the past several years, I have said during the public comment portion of Advisory Council meetings that the National Plan needed to match the aspirational and transformative 2025 goal for biomedical progress with similarly aspirational and transformative goals for clinical care and long term services and supports. At the Advisory Council's July 27 meeting, that conviction appeared to have sunk in with quite a few of the Council members. In particular, I want to thank L. Coleman and H. Johns for their expressions not only of exasperation but of determination that this Advisory Council, this National Plan, and this country must achieve vast improvements in quality of life for those living with dementia and for their families.

With that in mind, I'll offer a sample of a dozen actions that might help the Advisory Council get started (I'll be happy to flesh out any of these points):

  • Because the National Plan should be about person-centered progress that improves lives, not about issuing reports, holding events, and delivering units of training or service: work with public and private stakeholders to establish an ambitious national goal -- with metrics and milestones -- for lowering rates (among people with dementia and their caregivers) of isolation; neglect, abuse, and exploitation; falls; wandering; premature institutional placement; depression; pain; impoverishment; and inappropriate use of anti-psychotics in home and community-based care settings.
  • Because transformative innovation requires multi-sector collaboration, strong coordination, and a purposeful confluence of priority-setting, resource commitment, and accountability: recommend that the National Plan include creation of a dementia care a services parallel to the Accelerating Medicines Partnership (being led by NIH in the biomedical research sphere).
  • Because people living with dementia and family caregivers should have an easier time participating in and contributing to the Advisory Council process ("Nothing About Us Without Us"): the Advisory Council should conduct regularly scheduled public listening sessions in-person around the country or at least by web-conference and social media (e.g. Google Hangouts, Twitter Chats); add a "Comments" form to its ASPE website; add to each workgroup additional members (non-voting, if statutorily necessary) who are living with dementia or are caregivers; and consult with disabilities experts about other accommodations that would facilitate greater access and participation.
  • Because there is dignity in knowing your diagnosis and because diagnosis is the door to quality care, self-determination, and advancing social and biomedical research: work with public and private stakeholders to establish an ambitious national goal -- with metrics and milestones -- for rates of accurate, timely, and actionable diagnosis.
  • Because this is a national plan -- not a federal plan -- and quality of life issues are in no small measure defined by state and local policies and practices: actively engage in the National Plan process the National Governors Association, the National Council of State Legislatures, the National Association of Counties, the U.S. Conference of Mayors, and the National League of Cities to determine their capacity, interests, and best-practices.
  • Because, by statute and by common sense, Congress is a stakeholder in the NAPA process: work with the relevant congressional committees, the House and Senate Alzheimer's Task Forces, the congressional caregiver caucus, and the congressional neuroscience caucus to more deeply engage them in the advisory council's work whether by attending meetings, appearing as guest presenters, or simply making sure they receive meeting agendas, announcements and links to materials and meeting videos.
  • Because dementia is an enormous and under-addressed workplace challenge both for employers and employees: actively engage in the National Plan process the Office of Personnel Management, the Department of Labor, the Department of Commerce, the Society of Human Resource Managers, and representatives of both the business and labor communities to quantify those challenges and identify best-practices to change outcomes.
  • Because most people living with dementia and their caregivers have additional health challenges: actively engage public and private stakeholders focused on commonly co-occurring medical conditions -- such as diabetes, cardio-vascular disease, mental health disorders, hearing loss, and mobility loss -- to participate in the NAPA process of developing recommendations and action plans to improve quality of life.
  • Because dementia does note respect state borders: help states not only to share best-practices but also to form inter-state collaborations to address the needs of people living with dementia and their families who cross those state borders for services and for reasons of shared family caregiving.
  • Because dementia does not respect international borders either in its challenges or its solutions: formalize the National Plan goals and objectives with milestones and metrics about fostering international collaboration on research investments and priorities, regulatory harmonization, and translation and scaling of clinical and care practices.
  • Because living with dementia and caregiving for people with dementia is hard enough under normal circumstances but far more difficult during, or in the wake of, natural disasters: encourage the Federal Emergency Management Agency to participate in the NAPA Process to help develop recommendations and action plans to meet the ongoing and emerging needs of individuals, families, and institutions.
  • Because the Advisory Council is a bully pulpit: be vocal, candid, and relentless is pressing Congress to end sequestration and lift the budget caps that do very real harm to millions of people living with dementia today and in the future.

In closing, I offer my apologies for topics I have failed to address and I offer my thanks to others making public comments addressing such omissions. I offer my appreciation to Advisory Council members and staff who give of their minds and hearts beyond what words can express. I offer my hope to all those living with dementia and their loved ones that they will be heard, heeded, and healed through the work we all do together.


M. Sharp  |  10-20-2015

Hello and thank you for another opportunity to address the council. On behalf of The Association for Frontotemporal Degeneration I would first like to thank the new council members for agreeing to serve as members of the advisory council and contributing their time and expertise to this important project. I am Program Manager for AFTD. For those who do not already know AFTD, we are the only national non-profit advocacy organization dedicated to frontotemporaldegeneration in all its various forms. AFTD's mission includes: raising public and professional awareness of FTD, supporting research to effectively treat and ultimately cure the disease and improving the quality of life for all people coping with the related dementia, FTD.

AFTD is sorely disappointed that none of the 5 nominees we proposed or supported to serve on the advisory council were selected. However we do appreciate that at least one new council member with expertise in a non-Alzheimer's dementia was selected and are glad A. Taylor from LBDA has agreed to serve a term on the council. The secretary would be hard-pressed to find a more dedicated, knowledgeable and articulate advocate to represent Lewy Body and the other "related dementias" to advise and inform the National Plan.

Ms. Taylor's selection is an excellent step toward continued inclusion of the non-Alzheimer's dementias in the National Plan. Her perspective and expertise will continue to ensure that NAPA benefits all those affected by dementia.

While we congratulate the Secretary for adding such an excellent advocate to the council AFTD still recognizes the need for additional expertise and perspectives regarding the related dementias and especially FTD. As AFTD and Ms. Taylor suggested at prior council meetings adding a seat on the advisory council specifically for the related dementias is perhaps the simplest way to ensure that all relevant perspectives are brought to bear on the immense task before the council and will help accomplish the ultimate goal of the ending Alzheimer's disease and related dementias by 2025.

On another note, I am excited to share with Council the news that with the help of a generous donor AFTD is initiating a $5 million biomarkers initiative. Dedicated to stimulating discovery and development of biomarkers specifically for the various FTD clinical disorders and pathologies, we anticipate investing these funds October 20, 2015 over the course of the next 5 years and plan to leverage this investment to attract additional funding from various parties in the private sector.

I will also note that the AFTD Biomarkers Initiative is directly responsive to one of the recommendations to come out of the 2013 NAPA ADRD conference, which was--and I quote--to Develop FTD biomarkers for diagnosis and disease progression. In this, as in all programs we sponsor, AFTD is pleased to represent our community and cognizant that success in developing biomarkers to accurately diagnose or track progression of any of the FTD subtypes will also inform similar initiatives for Alzheimer's and all of the related neurodegenerative disorders, including Lewy body dementia, Parkinson's disease and ALS.

I look forward to keeping this council apprised of our progress and, as always, appreciate the opportunity to speak on behalf of our patients, their families, and the professionals who work with them.


S. Wellman  |  10-20-2015

Please start allowing teleconferencing at the NAPA meetings so persons with dementia can attend. As a 52 year old housebound woman with financial limitations and a diagnosis of FTD, I would like to begin participating in your organization.


L. Scherrer  |  10-20-2015

I am 57 years old and have been diagnosed with Early On-set Alzheimer's and FTD. Since traveling alone is not possible, it is very difficult for me to attend any meetings out of state. Please allow teleconferencing in these sessions. Since this Act directly impacts so many off us with dementia, our voice is important and we should have the opportunity to be heard!

Although your meeting is only 6 days away, please get teleconference we can get involved.


C. Whiting  |  10-19-2015

Good afternoon and thank you for your time today. I am the Director of Strategic Partnerships at the National Alliance for Caregiving. The Alliance is a national non-profit organization dedicated to the mission of advancing family caregiving through research, innovation, and advocacy. By way of introduction to the new members of this body, we have over 40 national and multinational organizations in our membership, including four federal agencies and both not-for-profit and corporate organizations.

Together, we firmly believe that if our society is to rely on family caregivers to provide long-term care, then it is our duty to provide support for family caregivers -- at home, within models of healthcare delivery, in the workplace, and in the workplace. To that end, there are three comments I'd like to make today.

First, I would encourage you to consider international perspectives through your work on this council. As Secretariat of the International Alliance of CarerOrganizations, the Alliance often learns about new models of support for caregivers of people with Alzheimer's and related dementias. These models offer insight into how we can better support families in the United States who are managing this terrible disease.

For example, Scotland's "Focus on Dementia" model provides a meaningful framework for integrating a diagnosis for dementia into care and support. The Focus on Dementia model creates a "hub" for the patient and family to navigate the challenges of the disease. The hub has eight domains, including: a Dementia Practice Coordinator; therapeutic interventions; general health care; mental health care; environmental adaptations; community connections and engagement; personalized support; and support for caregivers. Diagnosis operates as a touchpoint to refer the individual with dementia to the Dementia Practice Coordinator, and it allows both that individual and their caregiver to become eligible for services. As many of these services are government-provided, there is data captured on both the caregiver and the care recipient (or patient) that can address the effectiveness of the support provided and received.

The Scotland model reminds us that diagnosis can serve as launching point for referral to information, resources, and caregiver supports. While our long-term care system is not as robust, there are existing community, private, and government resources that could help the newly diagnosed. For example, diagnosis could activate referrals to: disease-specific advocacy organizations; information about the National Family Caregiver Support Program and Lifespan Respite program; or information about family and medical leave or other workplace supports.

To the larger point at hand, Scotland's Focus on Dementia is an example of what we could learn from other nations. Groups like the Global CEO Initiative, the Global Dementia Framework, and caregiving groups like the International Alliance of Carers Organizations can offer insight into the issues this council is currently wrestling with.

Second, I would encourage the council to prioritize a national Care and Support Summit. It has been acknowledged by academic experts and drug innovators alike that we are still many years from a disease-modifying therapy for Alzheimer's and dementia. While we work towards research that will improve our future, there remains unmet needs now. Please remember the needs of families who are caring for individuals with dementia in our midst and the costs inherent in their contribution such as lost income, foregone retirement, and worsened health.

Finally, I would like you to join the Alliance and the Alzheimer's Foundation of America in an ongoing social media discussion during November on brain health and brain screenings. #TalkBrainHealth is an educational campaign to encourage family caregivers to talk with their families about brain screenings for older adults over the holiday season. We will be sharing a one pager that can be used as "talking points" for caregivers of older adults to discuss brain health and the role of screenings, which draws from key resources like the Institute of Medicine report on cognitive aging. More information is available at http://www.caregiving.org/talkbrainhealth or you can find us on Twitter at #TalkBrainHealth.

Thank you again for your time and for your continued commitment to the people and families living with dementia.


M. Ellenbogen  |  10-19-2015

At the last meeting I was so excited waiting to hear how much money the NIH was going to recommend to Congress for research into treatment for dementia. I was then so very disappointed when they asked for just 326 million dollars be added to the budget. Why so little in comparison to what they did for cancer or HIV, and with the counsel's recommendation of 2 billion dollars? Others agreed with the 2 billion dollar figure, which is why it is so surprising. After everyone has tried so hard, and we finally get the opportunity of a lifetime, we are let down by NIH. If I understand it correctly, part of the reason seemed to be that they would not be able to deal with it if they had more money coming in. It is my hope that the council will send their own record to the congress and let them know how this recommendation is wrong and that it should be much higher.

On a side note, 2 billion is not even enough. What about the people here today? Why are there no advertising campaigns for dementia awareness yet? Some of you think I am too critical of you, and I have paid dearly for that, but please don't you think we should have some sort of dementia awareness campaign?

I have mentioned this before. I once had access to being able to call in, but the new administration has decided that it is not possible. Some of theCounsel members even recommended this should be addressed as the technology available today makes it very simple. I want to make it happen. When I reached out to the ADA they said a government agency must provide reasonable accommodations for a person like me. If I can no longer write or have problems driving, reasonable accommodations must be made. When they were all ready to help reinforce this, I was told they could not because it was HHS. They said they could help with any other government agency but not HHS. I am starting to wonder why things are different for HHS alone. HHS can take the lead here. Sending in an email is not the same as me being able to verbalize what I want to say. An email sent in advance also fails to capture what happens just before and during the meeting. Please reconsider your decision as I would like to be able to call in for our next meeting.

I am very grateful to be given the opportunity to be here again after having been banned from the last meeting. In life I have always tried to learn from my mistakes. While I heard you loud and clear on your expectations, I don't believe you fully understand what can be expected from people with dementia. If you are going to write policies and procedures on this issue, then you must clearly understand what this disease will do to people like me. We do lose our filters and say the wrong things at times. We also will do strange things in public that we would never have done when our brains were fully functioning. If you are going to educate the rest of the world then it is important for you to understand it first. Only then can you shed light on these issues and encourage others on how best to deal with us without trying to remove us from society. Please don't create more negative stigma, and don't make us feel worse because you don't understand how horrible this disease can be.

Before all this happened I was doing really great in my advocacy and knew what I needed to do each day. This action had a huge impact on me. I went from having a purpose to being completely derailed. I don't even know how to explain it, but I just cannot seem to get back on track to do what I once did best. I had reinvented myself to have a new purpose in life, which was not easy. While I cannot prove it, I do believe this incident has led to a much faster decline in the course of my disease. It is so important to realize this as your actions could have significant impact when dealing with those with dementia. I have lost my purpose and just can't seem to get back to where I was.

I belong to many groups, and I would like to share one post I recently read. It is called "Desperately Need to Share My Letter to God"

" Dear Heavenly Father,

I've reached my point of final desperation. I cannot go on like this much longer. I truly hate the disease that is taking my mother from me and Satan has taken hold of my leg and won't let me go making it even more difficult to handle.

For much of my life I never really knew my mom, but in the last 5 years that she has been living with me, I've come to learn that I love her more than anything. I am at the point where I can't bear to watch her suffer like this. It is tearing me up inside both physically and mentally.

While she is not in any physical pain, this disease is wreaking havoc with her brain. She is on an emotional roller coaster and is taking me along on its chaotic ride.

I am thankful to still have her but it is destroying me to see her struggle like this. I'm also still thankful that she can still take direction, but the unknown is for how much longer.

I finally accept the fact that I am fast becoming unable to care for her and in spite of how I have felt about her doctors telling me she needs to be in a nursing home, I fear they are right. I don't want to be my mother's caregiver any longer as it is just too painful. What I want is to just be her daughter again.

Her quality of life is just about zero. There isn't anything that she can do on her own any more . . . she needs help with everything. She has lost interest in her computer and she's bored with tv. She spends about 90% of her life sleeping. And when she is awake she's continually asking me why I hate her so much. How can I hate her so much if I keep taking her home rather than leaving her in the nursing homes, I've virtually given up living in my own home to be with her, I see that she gets to the doctor, I see that she gets dressed, that she has her 3 meals a day and her snacks and then sit here listening to her tell me that I don't love her, and again, why do I hate her so much (and each time it feels like a knife being stabbed into my already hurting heart).

I hear her cry out in her sleep for you to please take her in her sleep. She thinks that you too don't want her. She keeps asking me to help her because she doesn't understand what is happening to her brain and all I can say is that it's slowing down now that she is 95.

Please Heavenly Father, I really don't want to put her into a nursing home as I know that she will believe that I don't want her any more and that couldn't be further from the truth. I know it is your decision as to when it's time for us to enter this world and to leave it and I pray that you will soon answer her prayer and allow her to pass as she lay in my arms and not alone in a nursing home.

I'm sure you're aware that I have not been the best Catholic, but I am sure I don't fall into the classification of being the worst either. I beg on