Just my thoughts about dementia.

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How do we get the word out about dementia to the general public? A few years ago I was just like everybody else. I'd heard of Alzheimer's disease, even knew of a few in the community who "don't recognize their daughter any more, how sad". But it wasn't until I began to search for answers to my own situation that I understood that Alzheimer's was much more than memory loss, but a progressive brain disease eventually affecting every body system and causing physical as well as mental decline. And then there are the "other dementias". I'll bet ninety nine out of a hundred have never heard of Vascular dementia or Lewy Body dementia, let alone the mixed bag of other cognitive diagnoses. I am astonished at how may people ask if their loved one has Alzheimer's or dementia, and what is the difference? I place some of the blame for that on the Alzheimer's Societies themselves. It is accepted that Alzheimer's is the most common form of dementia, but the whole disease process of Alzheimer's is still largely a mystery and other forms of dementia seem to be on the rise. Perhaps a name change is in order, something like Alzheimer's and Dementia Society?
Some 10 years or more ago my Mom underwent a full body MRI checking her spine for degeneration as well as her brain to try and plan the best treatment for recurring TIAs. Her doctor told us then that her scan "lit up like a Christmas tree" and sent us on to a neurologist, who prescribed various medications to better control her blood pressure and cholesterol levels. Our focus at the time was stroke prevention, no one even mentioned the lasting aftereffects of multiple mini strokes. Families who don't know any better allow doctors to prescribe a profusion of medications to treat a bewildering array of symptoms with out ever realizing true extent of the problem.
Even in the most involved of families the problems of old age can sneak up on us unnoticed. Siblings go to war over Mom and Dad's care because symptoms that are obvious to one may be totally missed by others, or dismissed as simple old age. And how many stories do we have to hear about Dad cancelling the life insurance, Mom defaulting on the mortgage, or Great Aunt Sally living in squalor, with banks, corporations and even doctors and social services showing a lack of comprehension or compassion? It seems to me better basic understanding of the more complex symptoms and issues surrounding dementia would go a long way toward helping us get earlier and more appropriate help.

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cwille, BINGO, same here regarding memory issues and physical decline. I am amazed at the number of new writers on the forums who are wondering what is wrong with their loved one, why is their love one is acting this way, etc. and not even knowing to look for dementia/Alzheimer's, or even a UTI.... I can understand why, not enough public information.

I always heard the word "senile" while growing up but never gave it much thought. There was a great-grandfather who use to get lost walking home, and that is what I based being senile was all about, getting lost.

It wasn't until I was hired by a new company and my boss' wife had Alzheimer's that I finally sat up and took notice. As this was someone I got to know, who I talked to, and got to she her decline. And I learned a ton of information right here on this website and forums that today is helping me with my Dad who's memory is just recently slipping [along with mine !!].... gee, in the past I use to argue with him whenever he said something that wasn't logical... and Dad was always a logical person.

I have notice that my local newspaper, the Washington Post, has been doing many more long multi-page articles about dementia/Alzheimer's which I read... but do people read it if it is not affecting someone in their own family? Probably not :(
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Agreed. And the older a person is, the less interest doctors (and insurance companies) have in investing time and money in determining the "cause" of the dementia. As you said, it could be vascular or Lewy Body, or some other combination. When mom started her decline 10 years ago, I didn't know enough to seek an expert on this. The doctor simply said old age dementia and we accepted that, she threw Aricept at her three years ago, but mom didn't take it so we gave up. Then last year she said Alzheimers (but by then we were at our wits end) Yes, if only doctors were required to run specific tests to determine what it causing the onset of dementia or memory loss, maybe thousands of seniors can have the right treatment to slow down or prevent further deterioration. We will never know about Mom, but I can't help thinking "if only" maybe her dementia wouldn't be as bad today.
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Couldn't agree more. This all hit me like a ton of bricks about 3 to 4 years ago when my dad started failing mentally. I made all the rookie mistakes, trying to reason with him, arguments, etc. I had to get educated and get mom educated fast. We do much better with him now. It's breaking moms heart to see him decline but she's learned to roll with it much more these days. I don't know what the stats are, but it almost seems as though everyone will develop some level of dementia at some age. I never even though about caring for my parents 30 years ago When I left WV for a job 10 hours north in MI. I also never dreamed that ny two sibs would die very young leaving me as sole caregiver for our folks. It's a small contribution to the under education problem you mention, but I have been preaching to all my friends and family about preparing to care for our elders and also preparing our own affairs for when we are no longer able.
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