The single biggest problem with communication is the illusion that it has taken place.

- G.B. Shaw

Several months ago, responding to a law signed a year ago, the Federal Government began to form a committee to suggest to the agencies of the Federal Government how to belatedly respond to the Public Health Crisis created by the Baby Boom generation reaching an age where the symptoms of dementia are most likely to show themselves.

The first thing they did was to stop calling this a dementia health crisis and renaming it the Alzheimer’s disease crisis.  Just exactly who pushed that relabeling/redefinition of the 55+ forms of dementia into just one form (Alzheimer’s Disease) is anyone’s guess, but I have my own strong suspicions.

Promoting the myth of a “world without Alzheimer’s disease,” is more a slogan than it is to raise money.

The second thing they did was to decide that inquiries from the general public (you and I, just to name a few) should be referred to the Federal Registry.  It contains the history of the rules, regulations, and whatever else agencies and committees of the Government want to release to the public.  These are less reports.nothes of how and what went on, and more a record of what conclusions were drawn.

The third thing they did was to pack the committee with cure research true believers.  There is no champion of psychosocial research, they were required to include two human beings who were advocates of people living with dementia just that they be advocates.

The fourth thing that happened was our National Alzheimer’s Association presented the committee with a 48-page report, listing the 10 things that in their collective heart the committee must deal with.  This report was purportedly based on the newly discovered voices of people with dementia, their caregivers, and unnamed advocates.  To no one’s surprise, these demands mirrored the interests of the National Association, and just happened to support their 20+-year vision/quest to create a “world without Alzheimer’s.”

In the past two months, I have responded to each of their demands.  This month, I offer my own suggestions.  I previously, on two occasions, offered these to the association, but somewhere along the line, they were voted down and/or ignored.  They know what they know, and seem to have very little interest in discovering what they don’t know - other than the ingredients of a cure pill and/or an Alzheimer’s Disease vaccination.

I realized there are a limited, too limited number of dollars ear marked for Alzheimer’s disease research.  More than 90% of those dollars go towards pharmacologically based bench research.  Psychosocial research gets what is left over.

While I believe basic brain research should be expanded.  While I believe pharmacologically based research should continue.  Neither of these focuses should steal from the real need for research - how 5+ million people living with the symptoms of dementia can live a purpose filled, engaged, interpersonally satisfying life with the worsening symptoms of dementia.

Therefore, many of my recommendations deal with setting funding priorities.

If I had the ear of the President for a weekend at Camp David, I would suggest we first play horse, then if he didn’t beat me too badly, I would suggest a one-on-one game, then I would say:

1. The Federal Government should take 6 months and decide for itself how best to spend its research dollars.  Do not blindly follow the self-serving advice of “Alzheimer’s” researchers, associations, drug companies, or other “Alzheimer’s Disease experts.”  Bring together social scientists, researchers from other fields, people living with dementia and their caregivers, and let hem each and all be a part of the process of evaluating and setting national goals and practices. Read what the NIH itself said last year about how successful Alzheimer’s Research has been, and what the outlook for success (or in this case not).  What is needed is leadership to organize and fund research.  This is what the different Federal funding sources could collectively accomplish.
2. Over the next three years bench/basic/brain research (as it relates to Dementia) should reach the point where 40% of the available research dollars goes towards the development of pharmacological support for those living with the symptoms of dementia.  Over the next three years, “socialceuticals” (non-pharmacological, person centered, this life enhancing research), focusing on the real issues facing those living with the symptoms and their caregivers should reach the point where 60% of the available research dollars are earmarked for this type of research.
3. Each successive year beyond the next three, that - if funding by the Federal Government fails to move us closer (as determined by the NIH) to a “world without Alzheimer’s”, 5% funding will be moved from pharmacological cure research to non-pharmacological psycho social research each year such a finding is made.  If and when progress has been deemed to be achieved, then 5% of funding will be moved back to pharmacological cure research.
4. The President should grow his hair longer and wear it slightly over the top of his ears, perhaps also grow or weave a short ponytail.  (He should grow a set of handlebars, too!)
5. HHS (Health and Human Services) should assume the responsibility to lead the States and Towns in a massive education venture that directly addresses the myths, hoaxes, and lies about those living with the symptoms of dementia , and organizes and promotes professional and lay social support networks for all people with all forms of dementia in all levels of the disability.
6. HHS should coordinate the existing services of their agents to develop, promote, and act as a partner with other professionals in funding, providing, and evaluating direct care support services to those who are living with the symptoms of dementia and their care partners.
7. HHS should declare Dementia (not Alzheimer’s disease) as a Nation-wide epidemic, and urge the UN to declare it a pandemic.
8. States should be mandated to meet Federal care standards for all persons in all settings of enhanced care communities.  Special attention should be applied to significantly lower the staff-to-elder ratios.
9. As a condition of accepting more federal funds for most anything, organizations, for profit and not for profit Associations who seek to meet the needs of people living with dementia and their caregivers, especially those who raise money using the labels of dementia, should prove they are expending at least 50% of their income in direct research.services of those currently living with the disability of dementia.
10. The President should report to Congress every four months the status of this National Health crisis.  And, he should read this report aloud and discuss the progress in a televised prime time news conference.  Currently, there is no palpable sense of urgency in the citizens, politicians, and media of the United States to actively engage in a fully funded campaign of awareness and support for citizens living with the symptoms of dementia.  This current law passed the U.S.A.’s Senate five or so years after the idea was presented.  It passed the Senate unanimously because it is unfunded.  It costs nothing to pass, it promises no new funds/funded initiatives.  It is based on the hope of the Gingrich commission that we could save so much money by eliminating waste and duplication with the federal funding mechanisms.  We could spend more on cure research and may even actually be spending less overall.  Please, Mr. President, please lead us through this public health crisis.  Please!
11. As a condition of accepting more federal funds for most anything, organizations who claim to be supporting the needs of all people with all forms of dementia should establish they are spending at least 25% of their income on psychosocial and transitional psychosocial research.
12. Sorry, I first wanted to come up with 10 suggeer of suggestions, but I cannot, at least right now. Perhaps if the President and I inhaled for an hour or so, we could be more creative.

Richard