I have personally worked in or designed and led several large service initiatives including those on HIV/AIDS, drug and alcohol abuse, PTSD, domestic violence, minority services, and preventing transmission of HIV from a mother to her infant at the time of birth.
The first thing you do in public efforts to provide accessible, sensitive, appropriate, valid, needed, and culturally competent research and services is to add consumers of those services to your Advisory Board. Yes they might be quarrelsome at times and not understand all of the (usually trivial and inane) fine points of research and government regulations, but most professionals agree that adding consumers of the potential services and research is quite important in developing excellent services. Many also believe that the time of individuals who are consumers of the services studied should be paid at the same rate as the usual suspects (advocates, academics, and other self-important participants).
The American Academy of Neurology and the American Psychiatric Association are currently taking public comments on a process in which they developed draft consensus measures of Dementia Quality. Looking over the list of those who participated in the process I see no representatives of people with dementia.
Idiocy. And damn it, I think that I have a professional background, a proven research and healthcare record, and status as a Hall of Fame measurement psychologist that equals or exceeds that of the listed participating representatives. I also have dementia and write about dementia services. I personally am not looking for work — this blog keeps me as busy as I can be — but it is important to note that I could easily identify a half dozen other professionals with my level of expertise who also have a dementia-syndrome disease. So far as I can tell, none of the dementia-related public initiatives is including representatives of the people living with a dementia-syndrome disease.
My point is quite simple. Dementia research, services, and public policies can be made much better by including people living with a dementia-syndrome disease or condition. And it is not that hard to find highly qualified individuals who are in the early or mid-stages of dementia.
This is a huge failure of government, non-profit organizations, dementia charities and advocacy groups, and Foundations.
My free advice to you is that you should get GYST.
The current advisory group I am working with has a consensus in support of my recommendation.
JANUARY 27, 2016
The new members of our committee also agree with our existing position.
I think this is a HUGE issue; thank you for writing about it. — Tru
Thanks Tru. As always I appreciate your comments and look forward to them.
I do not know why the Dementia Research Initiatives and Dementia Agencies do not — as a general rule — include people with dementia as full members on their major decision-making committees as full members compensated for their time and reimbursed for their travel and meeting in expenses.
The excuse that these are “sick people” is nonsense. In the 1990s, in US Government initiatives at the Health Resources and Services Administration (Ryan White CARE Act) we required to include people living with HIV/AIDS on major committees. Many were ill, but we made fairly simple accommodations to the meetings and travel requirements, and spent a little time educating them (and the physicians!) on some research technical tools they may not have ever been exposed to before. The people living with HIV/AIDS (and the physicians!) made huge contributions to the field and all of the participants were happy we had healthier snacks at the breaks (besides the usual hotel overdone sugary ones) :).
The major accommodation needed at the meetings for the people living with dementia is probably to have very easy-to-understand notes taken throughout the meeting. A good visual notetaker making sketchnotes and leaving them displayed on big white stick-on sheets on the wall would be a good solution to the issue. We had such an approach at meetings of a 2000s initiative on elder abuse that also had consumer representatives, often also as guest speakers. Visual note-taking costs less than the fees for hotel-supplied coffee and donuts for a single break at such two-day meeting.
So once again, I say to the large “Dementia” Charitable Organizations and governments, where are the compensated and reimbursed representatives of the People Living with Dementia. As proven by various blogs and books, there are many in this consumer group who are well-qualified professionally and medically-able to participate in an unique and productive way.