Hi,
Just asking for opinion but if anyone is a health care professional and knows....

I see so much research for Alzheimer's and various diseases/ issues that cause dementia and behavior changes. Every week you read something new about a new test and what it shows or a new distinction between something like Lewy body dementia and Parkinson's.....YET, there are hardly ever any new meds or treatments.

What is the point of dragging out poor demented loved ones to all sorts of hospitals for expensive tests for evaluations that often frighten or confuse them when in the end, all they do is write a script for Aricept or namenda that does very little, or even worse, the side effects are dangerous for the elderly or frail.

I attend a support group and I see caretakers/family members going to specialist after specialist for hrs of assessment. I took my family member for a "neuro cognitive geriatric assessment" that lasted 4 hrs. The dx was so vague and ridiculous my hairdresser could have written. When I questioned the evaluators, they got defensive and said, they did not have time for Q&A.

I think this is just a big income producer for some health care professionals.
Evaluations and meds have been a huge waste of time, energy and $ and quite frankly the meds are dangerous, especially for the elderly and frail. I have gleaned more by observation and simply talking to family and caretakers who have been doing this way longer than me.

Thanks for your thoughts friends,
Diandra

Reading around here tonight and read your comments Diandra. I have so many thoughts on the medical industry and it's huge no doubt, and for me I work as much as I know HOW TO on prevention....on everything...if only I could have prevented osteoarthritis from coming to visit me when I was 18, I would have...this OA never left and continues to be a huge nusance...that's a nice word.

I believe firmly that the OPC's I've been taking for going on 2 decades have helped saved me so much. They are reported to address so many health issues.

Diandra, I am not a clinical health professional but (day job) have published some work on the basis of Alzheimer's Disease.

I think that the evidence is clear that Alzheimer's Disease is not "one disease" in the same sense that cancer is not "one disease". Rather, it is a multitude of conditions with some clinical signs in common. That means that a "one size fits all" (dietary supplements or anything else) approach is unlikely to be generally effective.

We have a lot more to learn about this.

On a personal note, my mother-in-law died from Alzheimer's Disease. She forgot everything - in the end-stage she was unable to recognise a photo of her husband. My wife and I did the best that we could as did her care team.

She died peacefully.

Hi Kiwi,

My Mum was the same as your MiL, but to the extreme. She lost all her memories of her life and family after age 6. It was devastating to us to be written out of her life totally. My Dad, our family (even her younger siblings) and years of travelling and living all around the World meant nothing as she was robbed of it all by this cruellest of diseases.

I am afraid she did not pass peacefully. She suffered hallucinations to which she reacted violently and, despite our best efforts and her wishes when she was well, spent the last years of her life in a Care Home. She was well looked after, but deteriorated from week one as she wasn't thinking for herself anymore.

Thankfully, there is a list of illnesses ready to take me before I reach a dangerous time, my last brain MRI showed lesions but no atrophy or plaque.

Dave.

Dave, thank you for sharing with me.

I really appreciate it.

I have friends who work with supps that work directly with the memory etc. A couple younger friends do have the fear of Alz as they had it in their parents. Another says she feels sharper on the Prevegan she takes...she's gotten off it says she misses it. She's going back on.

So much is unknown and genetics play a role is about everything health wise. Years ago when I heard about the aluminum issue, I got rid of all aluminum cookware, stopped using foil for the most part, so I don't know how much connection there is valid...don't know.

Thanks Kiwi,
I agree it is probably multiple issues.
You and your wife deserve a pat on the back.
Dying peacefully is all we can ask. I am sorry for your loss but hopefully you feel good knowing you both did your best.
I appreciate you sharing your info and experience.
D.

Hi again, Diandra. I was hoping you might get more direct responses too.

I totally agree with what you’re saying, though. My uncle was always a gentle man, and I never really ever heard him raise his voice in anger, not even once. When he started developing symptoms of dementia, he actually became an even nicer person. Whenever I would visit, he would smile when he saw me and he was unfailingly polite to me, helping me to a chair in the room, asking me if I wanted something to eat or drink, etc.

The problem came when he wasn’t able to recognize some people he knew any more, and my cousin then insisted that he needed diagnosis and treatment. I think the reason my aunt was so traumatized by the eventual incidents of violence is that it came from such a gentle soul, and I don’t think she ever believed that the violent behavior was actually a side effect from the medication, even though the doctors told her it was.

Diandra, I am sorry to read about your mother. Please don't hesitate to get in touch by PM if you would like somebody who has been where you are to listen to you.

Now, coming back to the theme of this discussion, I can think of circumstances where a differential diagnosis (AD vs something else) could be helpful. If it is "something else" then effective treatments may be available.

Other contributors have mentioned Namenda and Aricept - my m-i-l was offered both of them. My wife, using her enduring power of attorney status, refused. She checked with me first - their effects are at best marginal (day job skills investigation) though no doubt they are sources of income for the drug companies who sell them.

my sister died from lewy diseases I was wondering if that would run in the family