Week of May 18 - May 24, 2008

My name is Richard and I have been living with the diagnosis of Dementia, probably of the Alzheimer's type, and certainly with Alzheimer's syndrome for the past seven years.

Sign up Today to Become a Champion!

I'm looking for 5.2 million people to seek out someone who is living with the diagnosis of dementia or this sort or another, and get to know that person as a whole and complete human being. Pledge to get to know that person as a person of interest, as a possible friend. Every day folks in all stages of dementia wake up and say "hello" to a new day of their lives, while most of the people they meet say good-bye. Become a champion in your own mind and heart and in the minds and hearts of those directly and indirectly wrestling with the consequences of Dementia.

Please consider seeking out folks who don't have the diagnosis of Alzheimer's, but rather have been told they have some other form of Dementia. Their symptoms may be somewhat different, but they too are looking for friends, for support, for today, for themselves. These forms of dementia, while just as real, just as fear producing, just as disrupting to families are given at best lip service from organizations claiming to represent all people with dementia.

If you live in the USA about 60% of dementia diagnoses are of the Alzheimer's type, and 40% are of some other form of dementia. If you live in Europe about 40% of dementia diagnoses are of the Alzheimer's type, and 60% are of some other form of dementia.

Is Alzheimer's Disease Real?

Last week I was speaking in Ohio and someone told me the authors of The Myth of Alzheimer's (St. Martin's Press 2008) were also speaking nearby at another conference. I secured a ride over to their conference and listened to them speak, WOW! Earlier I had been reading their book, at the very same time they were reading my book. We both wished we could speak to each other. I spent the afternoon with these two brilliant, thoughtful, thought-filled, caring, and very sensitive brains, authors, human beings - thinking out-loud, listening, talking, and getting to know them.

The provocative title of their book, The Myth of Alzheimer's, is of course a double edged sword. It probably draws as many people to read the book as it draws as many people to not read the book, but think they know what it is all about by the title.

They challenged me and my beliefs about the disease and how I think about the disease. They, like me, are searching for answers to questions which seem to come from a growing consensus that the claim/hope/hype coming from the pharmaceutical industry and organizations deeply invested in the idea that Alzheimer's is a discrete disease and there is and will be a pill to cure it, is not in fact true!. All I and others must do, they keep shouting, is to spend enough money (NOW!) to discover (stumble across) the formula for the pill that will cure the disease. And in the mean time, they tell me, let's also spend more money on pills to maybe slow down the progress of the disease (even though no one really knows how or what we mean by the progress of the disease, nor how to measure it).

Although the bottom line for us who are somewhere in the midst of the disease process is how to cope with it, how to maintain a sense of purpose, how to stay in the moment - in today, it is useful to understand how others have framed for us what is wrong with our brain vs. the brains of others. The book wonders aloud how and why we got where we are. What part of this process is generated by what others tell us, and what part is generated from within? And how much of what is generated between our ears is a natural part of aging, and how much is an actual disease? And how do these two streams interact? Are we victims of a disease, or participants in the natural aging process of the human brain that varies from person to person depending on their genes, education, what they eat, the air and water they inhale and drink, and on and on and on.

Become a Difference Maker!

The best and most important action we can take (or at least this is what I believe) is seek each other out. Find/form/try groups, people, organizations, services, and if they aren't working try something or someone(s) else. But, keep trying to find solutions to the psycho-social-physical-real-imagined problems which come attached to the words "you have dementia, probably of this or that type."

Should we watch as more and more dollars are thrown at researchers who sit with mice, models, theories, guesses and hopes? Or should we stand up and advocate for more psycho-social research into how we can better cope with our symptoms? 

For me it isn't even a close call. I'm not advocating giving up bench-based scientific research, but clearly the people who allocate our tax dollars for research, the people who ask us for our own money to "support people with Alzheimer's disease" have lost sight of the consequences of this disease, have long held priorities that place research before people, tomorrow before today.

One national organization spends over sixty cents of every dollar it raises on supporting the search for a world without Alzheimer's. That leaves forty cents to cover overhead, fund raising, advocacy, and other national initiatives - and, oh yes, with what is left, a few cents for dealing with the world with Alzheimer's. 

That's back-asswards! It's people who don't have the disease focusing more on other people who don't have the disease than on people who do have the disease. What am I missing here? It's just plain wrong-headed. And now along comes these two authors who suggest it's more than a case of the wrong priorities. It is a case of misdirected, misspent efforts based on false assumptions. Assumptions promoted by individuals who have much to gain by promoting the assumptions. These aren't evil people, it's just the unintended consequences of their well intended actions produce more problems and less solutions for the people for whom they claim to champion. 

Let's all stand up, all 5 million of us (I realize some may need more support in accomplishing this than others, but let's all at least try.) Let's let others arm wrestle over brain aging vs. a healthy brain under attack by a disease which is amenable to a cure. 

Let's ask for and demand more support and research for our issues, today. Many of the national and local organizations which raise money in the name of our disease have decided for us that the research for a cure is much more important (look at how they spend their money), than supporting us, responding to the fears which plague our hearts, minds and families.  

It's time for an immediate change from a primary emphasis on the search for a cure to a primary emphasis on the search for strategies to support individuals and families who struggle with the symptoms of dementia every day. 

DISCUSSIONS:

Click here to join or view our readers discussing "Emphasize Real People Over Hit-and-Miss Research".

MORE INFORMATION:

My book, "Alzheimer's from the Inside Out," is in the midst of its second reprint.

ARTICLE BY:

Richard Taylor, Ph.D.

Edited by Peter Berger, Alzheimer's Weekly

Reviewed for medical accuracy by Dr. Boaz Ancselovic, MD, Geriatrician, Alzheimer's Weekly

COPYRIGHT:

Copyright © 2008. Alzheimer's Weekly LLC. All rights reserved.