Why dx Alzheimer's/dementia etc?
 

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.

Caroline, the link between aluminium and risk of AD remains controversial - I don't think that there is yet any clear evidence either way.

As far as Prevagen is concerned, you may find the information in this link of interest; http://myadvocates.com/blog/dangerou...-investigation .

The central issue is that Prevagen is taken by mouth and its allegedly therapeutic ingredient (apoaequorin) is a protein.

All proteins are broken down into their amino acids during digestion. Quoting from the link:

"The product cannot work as advertised because its only purported active ingredient, apoaequorin (a protein), is completely destroyed by the digestive system and transformed into common amino acids no different than those derived from other common food products."

Because of this, taking any protein which may be of therapeutic benefit by mouth is pointless.

Thanks, I brought this to my friend's attention again. She was going to get back on Prevagen. In the meantime I did a search on swansons search for:

memory brain supplements and up came 94 supps. I kinda liked MindCare.....

Caroline, I think that looking for dietary supplements which may reduce the risk of AD is a good plan.

My wife has begun to do this - her maternal uncle died from AD as well so she is concerned about genetic risk factors.

The information in this (fairly technical) paper could help you and your friend to decide which dietary supplements might be of benefit; http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4202787/ .

Kiwi, you have seen how much I talk about OPC's (grape seed ex et al) and for me I bank on these for so much of my health issues and prevention...we were told back in 1995, Pycnogenol may prevent cancer, and that is why I got on it. Now these OPC's are used in cancer research labs......

This particular friend can't seem to take the OPC's due to a colitis conditon she lives with. She also is challenged with horrible allergies/sinus and OPC's are HUGE with these issues.

I have not bought a drug for allergies/sinus since 1995.....

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.

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.

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?

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.

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

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.

Lewy Diseases
 

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

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.