Aug 27, 2011

Richard Taylor on the Alzheimer's Association

By Richard Taylor

Richard Taylor
Hello. To few folks surprise, I have been mulling over in my disorganized mind what next to do, where best to go with my issues/concerns with my/our/your National Alzheimer’s Association.

Let’s all stop dancing around the naked emperor.

It’s time to stop pretending the National Alzheimer Association is doing what it is supposed to be doing, helping who it is supposed to be helping, spending our money like it is supposed to be spending our money.

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It/they/Harry and Angela need our help/suggestions/offers of support. They have, to be kind about it, strayed from leading a movement to championing a narrow unrealistic dream of theirs and their Board of Directors. “Creating a world without Alzheimer’s”.

They cannot be all things to all people. They don’t have the money, time or staff. They cannot be the champion of research and the champion of people living with dementia and their caregivers. They don’t have the money, time or staff. They should not expect their local chapters to financially support their 25 year long dream quest while at the same time providing services to local area residents living with all forms of dementia.

This mandate from National puts local chapters in an awful position – raise lots of money, send 40%  to National – and with what is left over meet the needs of the folks living in your vast geographic area who are dealing with dementia. Educate everyone, support everyone, be everything to everyone – just plan on spending only 60 cents of every dollar your raise. This is absurd!

The National Association is wrong in so many of its assumptions and operating rules that it cannot be fixed simply by changing one annoying practice. It does some things well, very well. It does many other things poorly, very poorly, and many many other things it does it should not be doing at all. All and each of these activities need to be sorted out, reviewed, and prioritized. This should be done by a group that includes many folks living with the various forms of dementia. Its time to do that now before it implodes or explodes.

In the meantime it acts not as a leader in researching, educating, and meeting the needs of folks confronted by the symptoms of all forms of dementia, it acts as the leader of a group of researchers and pharmaceutical companies who want to discover a cure for a form of dementia that has yet to be scientifically established as existing, whose cause we are still guessing about, whose progress we cannot predict in any one person, and whose nature seems to vary from person to person.

What to do? Tell them what they should do, how they should do it, who should do it. Tell them over and over again. Tell them every time you publish something, every time you write someone, every time you talk to someone.

It’s getting harder and harder to run into their staff at conferences, they now only host money making narrowly focused research conferences where they are surrounded by friends looking for hand outs and pats on the back for their research.

They very seldom show up in any large numbers in International Conferences. They don’t host any education conferences in the USA.

They do hang around politicians.

They have convinced many politicians they represent the voice of dementia – cancel that-- the voice of Alzheimer’s disease, which after all in their minds is the same as the voice of dementia.

Many know they are broken. We are just starting to say this out loud. We need to move on and offer to help fix them. We need to pressure their board to open itself up to these ideas. We need staff to stop talking about a walk they seldom take. In addition, start talking and walking the way the National Alzheimer’s Association and Other Related Dementia should walk and talk.

Doing a few things well, getting a few things done is not good enough. Their core remains contaminated. Their budget is out of whack, their staffing is out of whack, their strategic plan is out of whack. There are concrete changes they could make which could better serve those in whose name they continue to support themselves and their personal causes.

Please, stand up. Speak Out. Now!

Here is the list of the dark angels who control the National Alzheimer’s Association. At one time the web site listed the companies or which each of the board members worked and their titles within the company for which they work. As one by one I began to contact them asking them about their policy decisions. they took down any supporting information about them. To my knowledge, there isn’t even, a board web address. Here is a list of the senior management.

President and CEO
Harry Johns

Management Team

Robert J. Egge, Vice President, Public Policy and Advocacy
Scott Gardner, Vice President, Chapter Relations
Angela Geiger, Chief Strategy Officer
Richard Hovland, Chief Operations Officer
William H. Thies, Ph.D., Chief Medical and Scientific Officer

What is your policy on conflicts of interests between your membership on thieboard and companies in which you have some involvement as owner, manager, employee, or investor?

Where is this policy posted for public inspection?

How do you handle perceived conflics of interest? i.e. I am a researcher, I work in the field, but I don’t personally in any way benefit from being on the Board?

Why aren’t there more folks living with the symptoms of dementia on the Board?

Why don’t more folks living with the symptoms of dementia serve on the Board of Directors, the committees that review and approve budgets, staffing, strategy? The same questions could be asked on behalf of ordinary caregivers. I'm sure some board members have loved ones being cared for by professional caregivers (some around the clock)


** Richard's comment was originally submitted under the article, Dear Alzheimer's Association Leadership. And, was also stimulated by the article,Eastern Tennessee Chapter of the Alzheimer's Association Declares its Independence from the National Organization, Is this the Beginning of a New Trend?

Richard Taylor, a retired Psychologist, was diagnosed with Alzheimer's-type dementia in 2001 at the age of 58. Richard lives in Cypress, Texas, with his spouse Linda, and his Bouvier des Flandres (dog), Annie. His son and family live across the street from him. He is a champion for individuals with early-stage and early-onset Alzheimer's disease, and author of the book Alzheimer's from the Inside Out.

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