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Old 06-30-2015, 08:51 PM   #11
Auntie Audrey
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Hi Diandra, I want to return to the original question of this thread:

”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 agree with you. If there are no new meds or treatments available, I see no point in subjecting an elderly loved one to unnecessary tests and procedures which can make the situation worse.

One of my uncles developed a type of dementia and my cousin was determined to find out the cause. The doctors ruled out Alzheimer’s, but despite many expensive hours of testing, a definitive diagnosis was never made. The doctors finally put him on Aricept, which could have originally been done without any testing just based on his symptoms alone.

Well, he seemed to improve on the medication, so they increased his dosage. The next day he became super angry and violent and finally had to be hospitalized. My aunt was traumatized and although my uncle recovered after his medication was stopped, my aunt never trusted him again.
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Old 07-01-2015, 05:53 AM   #12
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Quote:
Originally Posted by caroline2 View Post
Now these OPC's are used in cancer research labs......
Caroline, I saw the link that you posted about a clinical trial looking at OPCs in the context of AD - I hope that it gives good results.

I don't take OPC supplements but eat lots (all kinds) of fresh fruits and vegetables. They are full of antioxidants and many other good things as well.

The local saying for this is "eat a rainbow", meaning all colours of fruits and vegetables.

I think that you and I have different but equally valid ways of staying healthy.
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Old 07-01-2015, 07:31 AM   #13
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Yet again, I would like to return to the points specifically mentioned by Diandra to start this thread.

As I look back through the responses so far, most of the comments have discussed use of supplements and alternatives such as taking OPCs, avoiding aluminum, the effectiveness of Prevagen, and eating your fruits and vegetables.

Does anyone here have an opinion about questions posed directly by Diandra in her original post, such as whether or not the elderly with dementia should be subjected to lengthy testing procedures, or if medications like Aricept are dangerous or effective for them?
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Old 07-01-2015, 01:15 PM   #14
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People's decisions on the elderly med issues are all individual. I come from a prevention mind as much as I now know. Just hope I can keep my mind to my end. I think.
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Old 07-02-2015, 03:38 PM   #15
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Quote:
Originally Posted by Auntie Audrey View Post
Yet again, I would like to return to the points specifically mentioned by Diandra to start this thread.

As I look back through the responses so far, most of the comments have discussed use of supplements and alternatives such as taking OPCs, avoiding aluminum, the effectiveness of Prevagen, and eating your fruits and vegetables.

Does anyone here have an opinion about questions posed directly by Diandra in her original post, such as whether or not the elderly with dementia should be subjected to lengthy testing procedures, or if medications like Aricept are dangerous or effective for them?
Thanks Auntie Audrey,
I appreciate you steering the thread back to my original question.
As I watch my poor Mother, whom I love dearly, progress in her dementia....I am astounded at all the dumb advice I get from the medical profession and it just seems to be a money generator. This dementia will progress, the meds like Aricept only made her dizzy and cognitively "fuzzier". To me, common sense dictates to do with what we did back when people were just called "senile".
We kept them home and cared for them and loved them. My Mom is most happy with that level of care.

I was hoping to hear experiences like yours although I am so sorry to hear what your Uncle went through. Alzheimers and related diseases are a tragedy but from my experience, love and attention is what is needed in abundance, not drugs and never ending tests and evaluations. I attend a support group for caregivers and am horrified at what American Medicine has these caregivers go through and what they make their loved ones go through. If all these tests and scans and assessments produced valuable info it would be fine but after attending these meetings for 2 yrs, sadly, I never hear anything new....the advice is a drug like Aricept, or to place their loved one in a facility. It is sad for those who can no longer care for their loved ones themselves and we are approaching that and it is heartbreaking.

My post was from last fall....basically I was just venting because I was frustrated. I was so mad at what this doctor did to my Mom....she purposely pushed her to see how confused and agitated she could make her and she made her almost cry....that was totally unnecessary and quite cruel. My Mom said,
"Do I ever have to go back there????". I said, "No Mom, never...that doc was a jerk and we are never going back." The relief on her face was incredible....we then went out for big hot fudge sundae and all was right with the world again.

Thanks Audrey....all my best, Diandra
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Old 07-02-2015, 03:45 PM   #16
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Originally Posted by kiwi33 View Post
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.
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.
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Old 07-02-2015, 04:30 PM   #17
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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.
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Old 07-02-2015, 06:44 PM   #18
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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.
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Old 01-10-2017, 08:40 AM   #19
kanedenmk
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my sister died from lewy diseases I was wondering if that would run in the family
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Old 01-10-2017, 03:50 PM   #20
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Hi kanedenmk

I am sorry to read about your sister.

The causes of Lewy Body Dementia are not well-understood though the biggest risk factor is age; it usually affects people who are over 50. There are some genetic risk factors but these only apply in a very small number of cases. What that means is that it is very likely that the chances of you getting Lewy Body Dementia are no greater than for anybody else.

The information here might help you Lewy Body Dementia: Information for Patients, Families, and Professionals | National Institute on Aging.

All the best.
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