Thursday, August 13, 2009

Support in Numbers

5.3 million people are affliced with Alzheimer's disease. That's about the enitre population of the State of Minnesota where I live. No one can really say how many family members of Alzheimer's victims and loved ones are affected. Is it 15 million? 30 Million? 50 million? perhaps 15 to 20 percent of the population? Why are there so few blog's on Alzheimer's? Is it becouse video games are more fun? We are all going to get older and older. We live longer. Alzheimer's is not caused by aging and you know it is NOT a normal part of aging. The major risk factor for Alzheimer's is advancing age however.
If you live into your sixties, there is about a one in five chance you will devlop Alzheimer's disease. If you live into your 80's it is even odds. 50/50
We are a youth and beauty driven culture. Alzheimer's is not pretty. It is detestable.
Moreover it is a profoundly isolating experience for the caregiver. I know that most people taking care of a loved one or family member with Alzheimer's Disease (AD), probably do not have much time to read this. But you are not alone.
My mother was diagnosed with Alzheimer's Disease in 1979. I had just turned 17 years old at the time. I was her primary caregiver for two years. She went through every stage of the disease, and died about 8 years after the diagnosis. It was mean and aggressive.
She died in my third year of medical school. I learned all about Alzheimer's before it was a household word. Back when it used to call it "Senility" or "hardening of the arteries of the brain" Both of these terms are strong misnomers.
I treated many patients with AD over the years. I have seen there families suffer. I have lived the isolation and as a doctor have treated my patients and their families struggeling with the isolation. This blog is for the unity and hope of all those caregiving and surviving Alzheimer's.
When you know you are not alone, there is a little bit of fortitude that is added to the caregivers spirit and decreasgin that isolation in any way possible is my foremost goal

3 comments:

helenemoore said...

Joe, good work. More and more younger people are being diagnosed with Alzheimer's Disease.
One person can make a difference.
Helene Moore

Don said...

Do you think that the incidence of Alzheimers going from
1 in 5 in the 60's to 1 in 2 now could be strongly influenced by better diagnosis these days because there are actual treatments available? In the past because there was not much that could be done to help the individual, the diagnosis may not have been as essential?

Joseph J. Sivak MD said...

Thanks for the provocative question Don.
This brings up several issues.
The diagnosis and awarness of the disorder, are more prominent than ever. Why is that? Old Doc Alzheimer a psychiatrist and neuropathologist back in Germany discovered it back around 1906. Why was it for the first half of the 20th century no one ever seemed to have heard of the disorder?
We are easily living longer than ever in America, due to advancements in health care. Aging increases the risk of devloping AD. Nuff said?
Back when I was young in the 1970's I used to hear about somone being "senile" or having hardening of the "arteries of the brain" perhaps many of those people had AD. There really was no treatment. When my mother was diagnosed in 1979 there was still no treatment.
It started to be diagnosed more and more, in the 1980's, as we were living longer life spans.
What else happened? In 1980 the Alzheiemers Disease and Related Disorders Assocation incorporated. The NIH kicked a whole bunch of money into AD research (something like 13 million). President Reagan designated the first AD awarenss week in 1982. I can't say exactly why and how all that happened then,, (ironic since Pres Reagan developed AD).
So the drugs to teat Ad emerged in the 1990's. (supply and demand?) Drug companies social repsonsibility? The problem is all of the meds devloped in the last 20 years or so don't heal or cure the disease, they simply slow the progression rate in many victims. AND they work best when the disease is treated in the early stages. Early diagnosis became essential if you wanted the optimal treatment.
With that comes a whole continuum of how aggressive a doctor and a family wants to treat AD, since currently it will kill you anyway. A new degree of apathy developed, now we could not ignore it of look the other way. Once we knew it was there, could we sort of ignore it as health care professionals since we can't really cure it yet? This is a common phenomenon that many families go through now.
Personally speaking I would have accepted any treatment in 1979 to slow down the illness in my mother.
Now of course if we are politicially correct as many of us as Americans pretend to be, we must vilify drug companies, however the Awareness has increased and let's face it, Direct to consumer Advertsing by drug companies marketing their drug sure has increased the momentum for awareness raising.

Talking about the book with the Lake Superior wind....... a calm day