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Dementia Nomenclature Initiative

In 2016 the Advisory Council on Alzheimer’s Research, Care and Services for the National Plan to Address Alzheimer’s Disease recommended that these limitations in terminology be addressed. In 2019 Angela Taylor of the Lewy Body Dementia Association and Ronald C. Petersen, MD, PhD, of Mayo Clinic convened a committee to launch the Dementia Nomenclature Initiative. The Initiative was soon charged by the Advisory Council to recommend improvements in terminology that address interoperability of terminology for researchers, clinicians, and the public.

The Initiative formed a Steering Committee and working groups for each of these three constituencies. Funding for the work of the Initiative was provided by a consortium of nonprofit funders. The RAND Corporation was contracted to provide support for the work both in terms of content and process. Following review of the literature in dementia and in other disorders with terminology challenges, consultation with a range of stakeholders, multiple convenings and deliberation, and collection of input from persons living with dementia and family members, the Initiative has developed a new approach to explain the full spectrum of cognitive impairment and the diseases that cause it. Initiative members have taken the most common types of neurodegenerative diseases and integrated their basic elements into a clear Communications Framework (referred to here as the Framework), with the goal of creating greater clarity and consistency in communication about these conditions. The intended impact of the Framework and related work of the Initiative is increased awareness, expanded access to care and research, and wider dissemination of research results to the public, press, and policymakers.

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