How to Face Fear with Knowledge Part V

(We Have Come so Far these Past 80 Years, NOT!)

I AM USED, ABUSED, BUT MOSTLY CONFUSED! That is my view five years down the road to greater envelopment in Dementia World.

The articles listed below which I have posted on my archive each deal with the next phase in my discussion.

Click on each to go to my Archive to read them.

1.     Broader Definition of Alzheimer's Could Help Doctors Diagnose it Earlier

2.     Is Alzheimer's disease really curable?

3.     Alzheimer's: What if there's no cure?

That phase of my discussion bears on what to do until a cure is found for Alzheimer’s Disease (AD) and/or Dementia? The articles go a step further suggesting a cure may not be found. What then? The question then becomes even more critical!

To add to the discussion I refer you to How to Face Fear with Knowledge Part III which discusses a post to my archive entitled Challenges Accepted Approaches to Research in Senile Dementia (Alzheimer’s Disease. It is the context of these article and others like it that cause great concern in me. This together with what I consider the hidden agenda of the government and public support groups create my need to speak out.

We with the disease, our families and those who care for us, suffer more consequences of this disease than we deserve. We face an extremely unfair and high cost for care not given by our families. These costs produce profit for investors and drain our funds to nothing. If we received some of the attention given to raising money for the cure, if attention were also paid to efforts to find economy in care, we could all be better off.

It is costing us now. This will accelerate as the numbers with the disease increase exponentially. A quantitative increase will result as diagnosis is made earlier and as the “Boomers” enter their senior years as they have this year. Boomers will be reaching age 65 for the next eighteen years.

Costs currently are confiscating our personal funds. Once we are wiped out financially we will go on the “Dole” collecting public funds to care for us. As the number of those afflicted increase, this will obliterate public funds to the point of exhausting all backup funds for care.

This is serious! Absolutely serious, as we blindly follow yesterday’s path which led to nowhere and continues leading to nowhere now. It seems folly to apply more funds to research until the researchers produce some concept of cause of the disease more than the assumptions currently made that have produced no result in the past 20 years.

Is the foregoing no more than posturing?

I have been on watch for the past five years since my diagnosis. 


Fortunately I can still read, understand, analyze, draw conclusions and write about it. I have served on the National Advisory Board during 2008-09, appeared part of a panel before a joint fact finding meeting of the National Alzheimer’s Association and the Federal Agency on Aging in 200; I have been active at the local level of MN-ND Alzheimer’s Association and I served on a committee appointed by Minnesota’s Governor to draft legislation for an overhaul of services for AD in this state.

Throughout all of this involvement and all of this work I have become convinced that those of us with the disease who are called on to participate are called because we are specimens; we are something to wave as a sensationalized flag, piping “this guy has it, if you are not careful you will get it too, unless you give us money to fund research to find the cure, and we can make AD disappear.”

It is in this I feel very used, and abused by the use made of me and my disease. I have been interviewed by media locally, nationally and always my plea has been, give us more programs, more help, concentrate on finding Economy in Cost before we all individually, as a community and as a country are broken financially.

The four articles noted and posted are rife with statements of the futility and subterfuge of public support and governmental activity to deal with AD. They but deal with one issue, money on more money. “We do not have time for programs; we can do nothing about cost” they say. They say this as we suffer the cruel reality of it.

When we start to recognize the subterfuge of it, the use made of us to sensationalize their efforts, the way we are exploited, it is no wonder that we are shunned and abandoned in our community and circle of family and friends. As Dr. Alzheimer’s said in 1902 and doctors continue to say in 2011, “There is nothing we can do for them but keep them safe and institutionalize them when that is no longer possible.”

I quote from the four posted articles as a “teaser” of what content they have:

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?

[How to Face Fear with Knowledge Part III]

For the first time in 27 years, health authorities have expanded the definition of Alzheimer's disease.

The change, announced last week by the National Institutes of Health and the Alzheimer's Assn., is intended to help doctors diagnose patients in the very early stages of the neurological disorder, including those who have yet to develop any outward symptoms. The new approach could ultimately help millions of older Americans spend more years with their mental faculties intact.

By the time a patient becomes demented, it is "too late" for medications to be of any help, says William H. Thies, chief scientific and medical officer of the Alzheimer's Assn. in Chicago. So researchers are trying to develop drugs that could slow the progression of the disease, for which there is no cure.

[Alzheimer's: What if there's no cure?]

The decision by health experts to separate Alzheimer's disease from age-related dementia and deem it potentially curable "opened a Pandora's box" and may have misdirected research for decades, a team of scientists suggests in a new analysis of the field.

Despite great efforts to find treatments to stop or slow progression of the disease, there are only a few medications for Alzheimer's disease and they only help mitigate symptoms, not the disease process.

[Is Alzheimer's disease really curable?]

Dr. Ming Chen at the University of South Florida suggests that "tremendous social pressures" have pushed scientists to target Alzheimer's as a curable disease. Despite all the research, however, they say the cause of the condition remains unknown and "there seems no major progress expected any time soon." The researchers are not proposing giving up on treating Alzheimer's. In fact, just the opposite: They believe scientists should refocus efforts from searching for an underlying villainous pathogen to manipulating neurotransmission in the brain.

In other words, to deemphasize the quest for a cure and to look instead for effective prevention and treatments that focus on dementia as part of the aging process. They stress the importance of controlling risk factors, such as diabetes and hypertension, that are believed to make people more vulnerable to developing Alzheimer's, and energizing the aging brain through social activities.

As the baby boom generation ages, dementia will become a larger social and healthcare problem.

Scientists would be remiss if they weren't constantly reevaluating their mission and direction and reconsidering funding priorities. They should certainly seek more effective treatments for Alzheimer's, and there's every indication that they are

[Broader Definition of Alzheimer's Could Help Doctors Diagnose it Earlier]