How to Face Fear with Knowledge Part III

Alzheimer’s Disease, since first identified in 1902 by Dr Alois Alheimer, was not then understood. It is not understood much more today. Generically it is a name given to common symptoms of brain damage or brain dysfunction that starts out gradually and progresses to the point that it takes the mind then the body and then the person afflicted with it. When it is done wreaking its vengeance the person dies.

It falls under the class known as Dementia. There are other kinds of Dementia, the most numerous diagnoses is of those said to have AD. The process is nonetheless the same. The brain and the body go than goes the person with it. In the later stages little can be done for the person with it other than trying to make that person comfortable. In the earlier stages much can be done to secure the person afflicted with a good quality of life, and keep her/him functional and out of institutionalization as long as possible. This adds to quality of life and saves society the cost of care which is intolerably high.

The history of AD treatment and diagnosis is checkered. Until the late ‘60’s and early ‘70’s little was known or discussed about it. It was an old people’s disease, contracted only by the person old enough to have it, and then it was considered more likely senility, a simple aging breakdown of the brain’s ability in cognition. No great attention was given it, if you were “lucky” enough to live long enough it is something that came with that geography.

In 1970 the numbers grew enough to create concern in the professional community. As related by a charter director of the National Institute of Health (NIH) in an address of his I attended he stated that it was around this time the government started to fund the NIH with the directive that they deal with AD. Getting into the field the NIH found research deficient as to identification of the mechanics of AD and/or how to deal with it from a care stand point. They were particularly concerned about the total absence of knowledge about what happened in the body to bring the apparent brain cell damage about, and how to arrest its progress in doing that.

He explained that the NIH did not have the mandate to do research. Research of AD was horribly deficient. They could not expend their funds to do research. Therefore, in conjunction with another group trying to form a group to deal with AD, they formed the Alzheimer’s Association. They gave it the direction to become involved in raising money to fund research on AD.

Very quickly the funding activity narrowed to that of raising money to find the cure. This is why they were formed; (according to the rep from NIH) this is what they were charged to do. They have been doing that ever since.

I was floored when I heard this. I have found nothing to validate this statement and serve as another source until doing research for this article. I found a published article entitled New Study Challenges Accepted Approaches to Research in Senile Dementia (Alzheimer’s Disease). You will find it in my Archive by clicking on the title.

Noteworthy portions of the article said the following:

Although intensely investigated over the last three decades using cutting-edge technologies, the “pathogenic cause” of Alzheimer’s disease has not been found. While many research “breakthroughs” have been claimed and high-profile drugs trials carried out, why does the promised “cure” still seem to elude scientists?

In an effort to address this question(the  author’s) undertook an independent and systematic analysis of the underlying research assumptions against the established scientific principles.  This analysis led them to hypothesize that perhaps the main problem is the research community’s perception of the disease.  

…the authors suggest that when the National Institutes of Health separated out dementia from other senile conditions and redefined it as a distinct and “curable” disease — Alzheimer’s – in the 1970s, it opened a Pandora’s box and may have misdirected research for decades.  It triggered the search for pathogenic factors and cures, and disregarded the role of demographic change and its diverse end results in the elderly. 

The authors argue that senile disorders – diseases occurring after age 60 and eventually affecting the majority of the elderly, such as tooth, hearing or memory loss – are caused by aging, thus differ fundamentally from distinct diseases by origin, study paradigm and intervention strategy…

…  “Lifestyles and other risk factors are the key.  So we think that senile dementia may be explained by ‘advanced aging plus risk factors.’  This model points to a new direction for prevention.  This means we must support the elderly in healthy lifestyles.  And we should develop medications to extend the lifespan of old neurons, rather than looking for ways to inhibit far-fetched ‘pathogenic’ factors.”

…Since they have not taken into account the fundamental roles of aging and risk factors, it is clear that these theories, though highly appealing to the public and researchers alike, are of little relevance to the scientific nature of senile dementia.”

“The two overwhelming concepts, senile dementia as a distinct disease and the Ca2+ overload hypothesis, have effectively blocked any meaningful progress in senile dementia research, and have inhibited the self-correcting mechanism of science,” concludes Dr. Chen.  “An independent scrutiny on the field may be helpful.” 

The agenda of the Alz.Assoc to raise money to fund research is a wonderful mandate to follow.

Nevertheless it should be stated by them openly instead of sensationalizing the disease as they do in an effort to raise funds. Each of the state satellites of Alz.Assoc is charged with raising money, was required to pay over 40% of what they raise which has now been increased to 60% I have read . (See: The Local Versus National Alzheimer's Presence by clicking on it and go to my archive where I have an article discussing this by a person from Wisconsin)

Not disclosing the cut and the singular agenda raising funds is tantamount to fraud. Worse than that it is exploitation of those of us with the disease to work for the funds and wave our limitations before the public.

Never do we hear from the Alz.Assoc “Let’s help out the folks afflicted by the disease remain functional.” The absence of such comments and the further absence of meaningful programs for early stage validate this. There is no attempt to attack the cost of institutionalization or find economy in care. They are just too busy with fund raising activities.

Some local chapters becoming aware of this discrepancy in activity have been withdrawing from the Alz.Assoc and refusing further funding to them. This seems be heard because all of a sudden we are seeing activity starting to fill this gap.

As recently as January 27^th of this year Harry Johns President and CEO of the Alzheimer's Association made the following comment as a news release:

Alzheimer's is a tragic epidemic that has no survivors. Not a single one,

As part of that release he went on to say, almost quoting Alois Alzheimer, there is nothing we can do for them but keep them safe and make them comfortable when finally we must institutionalize them. Based on this supported by a publication of the Assoc. that stressed the numbers and the coming epidemic level that AD will reach, he stated only option to stave of the negative affect is raise more money to find the cure.

In my career as a trial lawyer I have heretofore stated I learned a lot about medicine. One case I handled in upper New York State was that of a child with a pre-natal developmental disorder. My friend the doctor who worked with me put me in contact with one of the top experts in the country at Harvard. His field was Pre-Natal Developmental Disorders. I retained him, sent him all the information he needed and asked his advice and direction. I wanted to know what I was dealing with.

He told me there were as many different pre-natal development disorders as there we children born with them. Each one was different than the others. The medical practice dealing with them tries to categorize them under similar symptoms. He used Down’s syndrome as an example. Everyone believes this is one illness. It is not, each one is different. There are similarities like so-called Mongoloid eyes, short lifespan, limited cognitive ability etc. But each one is different from all the others. These disorders do not have a singular source of cause and singular way of treatment.

I remembered this when I encountered AD. It seemed to me AD was as generic as Dementia. The fact the Dementia included AD, this made it larger in number than AD but little else made each person having it different from all the others. It struck me that it each case has no common cause. Some of the causes are genetic predisposition, early onset, later onset, different limitation and different courses of the disease.

How could the professionals hope to find one medication that would get at the core of the cause of the disease in order to put an end to it?

This leads me to the next topic I will deal with in my next post. Well-meaning as all of the professionals are, particularly the fund raisers, something fundamental seems awry. I have believed a silent agenda exists that is the reason for the singular approach of the Alz.Assoc. I am deeply troubled by the sense of being used as one afflicted with this disease. We are listened to appointed to serve in an advisory way on a variety of boards, but we are not heard. We are patronized, patted on the head and made available to the media to give personal testimonials in the nature of “A Day in the Life of One Afflicted by Alzheimer’s”