Ten days ago, a group of about 50 people came together in Washington, DC. Their mission: to create a consensus around better ways to support people who live with dementia. The group consisted of practitioners from community to skilled care environments, researchers, family members, policy experts and representation from the Department of Health and Human Services and Congress.
The meeting culminated a series of online conversations around the nature of supporting people beyond the use of psychoactive medication. After reviewing and editing a draft document, the group met face-to-face to identify common principles and move forward with a plan to create a position paper and disseminate it to various constituents around the country.
I was privileged to be at the meeting, as part of the “practitioner” representation. The discussion was deeply engaging and thought provoking, respectful but passionate. By the end of a very full day, much had been accomplished, and next steps were identified.
One disappointment was that no one living with dementia was able to be there. Attempts to identify local participants were unsuccessful, and the group dynamic would have challenging for many individuals. (Part of the “next steps” will involve reviewing our work so far with focus groups of people living with dementia, to incorporate their feedback.)
One great area of satisfaction for me was that the discussion very quickly moved away from merely producing a laundry list of “non-pharmacologic interventions”. Instead, the group focused on the context—creating guiding principles for a more holistic, individualized and person-directed approach to life.
Equally important was the opportunity for this group of dedicated people to meet face-to-face and forge a new alliance to move our society’s view of dementia from one of losses to one of retained strengths, from disease to changing ability, and from disenfranchisement to authentic partnerships. Hopefully, the results of our work will advance these ideas on a large scale throughout our society.
A white paper is being prepared to bring to Congress during the current term, and plans will be made to create new research opportunities and to educate a wide variety of stakeholders. Stay tuned.