DAA-2nd-summitThe 2nd Dementia Thought Leaders Summit was convened in Washington, DC in June 2014 by leaders from CCAL-Advancing Person-Centered Living, AMDA: The Society of Post-Acute and Long-Term Care Medicine, Planetree, and The Eden Alternative. The purpose of the one-day Summit was to form consensus agreement among a diverse group of thought leaders and dementia care experts on what is needed to improve dementia care in the U.S.

A single overarching goal and four strategies were consensually identified to achieve improving dementia care in the U.S.

Overarching Goal

“Help people live fully with dementia.”


Strategies to Improve Dementia Care in the U.S.

  1. Coalesce, connect, and engage a wider spectrum of people, organizations, and communities to amplify voices and advocate for changes.
  2. Increase awareness about dementia across the country and educate the diverse dementia care audiences.
  3. Optimize health and well-being for people living with dementia.
  4. Reduce fragmentation and strengthen access to and utilization of dementia care resources, supports, and services.

“It helped us realize the far-reaching implications that a dementia diagnosis has on lives. The loss of control over decision-making, the focus on treating their illness versus nurturing their spirit and well-being…Our focus should be on the people living with dementia, not the condition itself.”
Chris Perna – CEO, The Eden Alternative and Co-Leader of the Dementia Action Alliance

Because of the power of words and issues around the use of some terms, email exchanges were initiated two months in advance of the Summit to form consensus agreement on what terms were best and should be widely adopted.

  • Dementia, including Alzheimer’s is preferred over other terms such as ‘Alzheimer’s and related dementias’. ‘Dementia, including Alzheimer’s’ is a more inclusive term. It recognizes the prevalence of Alzheimer’s yet does not diminish “related dementias”.
  • Person living with dementia is preferred over ‘patient’ or other such terms. It is felt that the term ‘patient’ stigmatizes the individual and focuses on the medical condition. ‘Person living with dementia’ underscores that people continue to live with the condition.


Click here for a list of the Summit participants.


We gratefully acknowledge the Summit sponsors: