The Stereotype Of Horror Propagated By The AD Support Groups Undermines Treatment Of It!

In my last Blog Post DIAGNOSIS: Alzheimer’s or Dementia, or Whatever? I finished with the following paragraphs:

There is of course more and difficult action sorely needed. We need to educate everyone about the difference of Dementia, about AD not always able to be discerned while in the early stage, but a more generalized Dementia is able to be diagnosed and dealt with.

This means stepping away from the severely damaging stereotype AD has become.

We need to create an entirely new paradigm for the treatment and care of all Dementia.

We need to attack the cost of care head on.

Finally we need to take a real look at AD, recognize it as no more than a general category under its more general parent category Dementia. If we are to research for a cure we need to determine what mechanisms of damage we are able to define, what common pathologies exist between them and what it is the needs curing to eradicate the many different forms of this disease.

I will follow with more on the foregoing in subsequent posts. For now I point to the foregoing confusion in the field to exemplify the need to drop AD as a knee jerk finding, limiting its diagnosis to when it in fact can be identified, which is rarely in the early stage and get more on point in protecting us from the ravages that are building, much of which is aggravated by muddle in the way we are now handling it.

Trying to do something about the care and concern for folks with this disease is like Greek Mythology’s Sisyphus:

In Greek mythology Sisyphus was a king punished by being compelled to roll an immense boulder up a hill, only to watch it roll back down, and to repeat this action forever.

The word "sisyphean" means "endless and unavailing, as labor or a task". http://en.wikipedia.org/wiki/Sisyphus

There is a silent agenda surrounding the effort to raise funds for research to find the cure. I have written of this often in the blog and for me to do more would be redundant. That silent agenda surrounds the effort to horrify the public about the disease AD, using names and taking positions that scares people into contributing. The object of this is subliminal. “Give so You Don’t Get it Yourself.”

There are far too many groups at the trough sucking up the funds raised for research and for care none of whom are the families affected by the disease AD. These are the Profit Makers.This effort feeds the stereotype that AD has become best typified by Harry Johns:

"Alzheimer's is a tragic epidemic that has no survivors. Not a single one," said Harry Johns, President and CEO of the Alzheimer's Association. 1-27-2011

 Johns made this statement in publicizing a new publication by the Association showing the rising numbers of people with AD and the impossibility of closing this fund gate. In the body of the statement he goes on to say:

“Alzheimer's will darken the long-awaited retirement years of the one out of eight baby boomers who will develop it. Those who will care for these loved ones will witness, day by day, the progressive and relentless realities of this fatal disease. But we can still change that if we act now."

According to the new Alzheimer's Association report Generation Alzheimer's, it is expected that 10 million baby boomers will either die with or from Alzheimer's, the only one of the top 10 causes of death in America without a way to prevent, cure or even slow its progression. But while Alzheimer's kills, it does so only after taking everything away, slowly stripping an individual's autonomy and independence. Even beyond the cruel impact Alzheimer's has on the individuals with the disease, Generation Alzheimer's also details the negative cascading effects the disease places on millions of caregivers. Caregivers and families go through the agony of losing a loved one twice: first to the ravaging effects of the disease and then, ultimately, to actual death.

The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer's

Lip service is given in their mission statement, viz. “to provide and enhance care and support for all affected.” In the past 6 years in which I have been publicly involved with this disease including serving a year on the National Advisory Committee of the National Alzheimer’s Association and a Committee appointed by the Governor of Minnesota to write new AD legislation. In this and many other activities I have experienced little effort by the Association to do anything to provide and enhance care and support.

There have been some efforts but never a whole hearted one given this until very recently when public opinion of the masses affected by this disease has become more vocal and is now getting action.

There is so much about the field of Dementia that remains untapped as it regards people afflicted. AD is a classification of Dementia and is a subordinate classification itself. The best comment I heard of AD was that of my Neurologist: “There are as many different kinds of AD as there are people who have it.”

It is seen as a specific disease when it comes to research. It is seen by the public as a one way ticket to the perdition of gross mental and physical incapacitation. It is this concentration on the final stage of AD which in fact occurs that stifles so much that otherwise might be done.  Any effort to help out folks before they get there, or effort to help them prolong the time that they can continue to have a tolerable life, is not promoted. It furthers the misconception that all people with it are enfeebled, helpless, mindless lumps.

If you have AD you are best left alone, We tend to be abandoned. We are considered incapable of meaningful exchange. A diagnosis of this disease is a sentence to solitary confinement.

There is so much that can be done, needs to be done, can be done to get us out of solitary confinement in into the general population.

More to come on this in my next blog