Should I join Alzheimer's study?
 

I responded to an ad in the Daily Sun that was looking for healthy people at least 65 years of age. I thought the study would be about lifestyle where they compare one group with another.

But I got a call yesterday and found out that they will be testing a drug. It will likely be a double-blind study with half the group taking a placebo and half taking the active ingredient. It's not intended to be a cure but to see if it helps to forestall dementia.

I have an appointment to get a blood test to see if I have a gene for Alzheimer's. Only those who have such a gene will be accepted into the study.

I'm not sure I want to know whether I have the Alzheimer's gene or not. Having an Alzheimer's gene does not mean one will necessarily get Alzheimer's. If I have such a gene I will likely be persuaded to take medication which will have some sort of side effect. So I may end up doing more harm than good.

Should I go for the blood test? What would you do?

Run. I think it would be better not to know for a number of reasons.

Thanks, I think you're right.

What was the question again?

If they told you that you had the gene, you would worry about it all of the time. Even if you have the gene, who is to say at what age you would even get Alzheimer's? My mom didn't get it until she was 90 years old. I wouldn't do it myself.

Is this blood test as accurate as this year's flu vaccine formula?

That should be a study to remember.

Oh, Puleez!

Why is it that people make jokes about Alzheimer's disease? People don't seem to joke about other deadly diseases with no cure. For people who have had relatives or other loved ones suffer and die from this disease, it is hard to find the attempted humor as funny.

My Mom had dementia and some of the things she would say were very funny. Even today we recall and laugh. We are not mocking the disease, just remembering her and knowing she would have a good laugh herself. I was her sole caretaker so I know well the stresses of the disease and enjoyed the humor.

To take a medication with side effects when it is not necessary to take it in the first place would be enough answer for me to skip the whole shebang.

Back to your question, it was generous of you to even consider participating in this study, however, your involvement may be more than it appears on the surface.
Would I want to know beforehand, probably not. If I did know, would I want a placebo, probably not. Would I participate, probably not. IMHO. By the way, I am very cynical of most "studies", for every study, there is another study to prove just the opposite.

As a person who has had and currently has loved ones suffer from this disease, I don't find it offensive at all. In fact my mother says all the time that her favorite thing about alzheimers is that she gets to meet so many new people.
We're a family that tries to find something to laugh about instead of something to be offended about.

My Mom has had this terrible disease for 9 years. We, including her, are always making jokes about her disease with Mom. Laughter is good. It is the other times that are soooo sad.

I think because it is a way to divert thoughts from the awfulness of it and the fact that at this point we haven't a cure.

I do it myself sometimes, joke about memory loss.

The burden of care is so overwhelming to the one in charge that there is nothing I can find to say. It is one of the hardest jobs any human is called to do.

It just isn't just the endless questions, or the erratic behavior or the fading right in front of you of someone you so love. It is also the never being off duty, the physical work and the terrible expense and the hopelessness.

Perhaps someone can post the link to The National Alzheimers Association. It is a worthy recipient of our support. Both with money and with time to spell a family member.

Gracie's post above is excellent. My wife and I took care of my mother for more than six years in our house. Twenty four hours a day. One's mother, who back when, was one's mom who was all love, caring and wisdom. The change is radical and heart wrenching, and one of the greatest thank you's children can give in returning care and comfort.

Because we are human, and not trained as either caretakers or unfeeling robots, we need to release pressure, often with the loved one. And yes, joking is a release and a needed one. It doesn't detract from the quality of caregiving or the sadness of the overall situation - it allows one to get through it as certain times.

Maybe this is a bit off topic, but I remember, back in NYC, many many of my friends were police officers. The way they could laugh at some of the things they saw and encountered on their jobs astounded me. They made light of some really bad situations, and they told me why. It made sense, and joking and kidding in these situations makes sense too.

Your points, as usual, are well taken.

I certainly understand from time to time caregivers or loved ones needing a release from the burden. What I find disturbing is jokes or insensitive comments from people who have been fortunate enough to never experience personally the devastation that the disease causes.

Having said that, I think that most people who make the comments are not mean people, they just do not understand how not everyone may see their comments as humorous.

testing any drug is very dangerous , that is why they test it. to find out not only if it works but other side effects. so you decide .

How do you know, on a message board or anywhere else, who has and hasn't been affected by the disease? I have a very large circle of friends and acquaintances and don't know a single one who has never been affected by it. I would venture a guess that most if not all who offended you in this thread have, also.
Wouldn't it disturb you much less if you didn't make those assumptions?

Making assumptions is what people do. Then they talk and then they listen and then they learn.

You have posted many, many, many times that you never take drugs of any kind.
It is obviously something you consider extremely important.
Why on earth would you even consider taking an experimental drug with unknown side effects?
I just don't get it. :confused:

Quote:

Originally Posted by Barefoot (Post 999918) You have posted many, many, many times that you never take drugs of any kind.

Good point.


And the study would probably not take VPL because of his rather unusual diet. I am sure they are seeking people who consume a more general diet. Usually studies like to stay within the framework of certain perimeters.

Does it really matter? Perhaps OP just wanted to generate a discussion. No harm done.

///

[quote=Villages PL;999396] If I have such a gene I will likely be persuaded to take medication which will have some sort of side effect. So I may end up doing more harm than good.



Barefoot hit the nail on the head. As she has mentioned, you have ongoingly said in your ad infinitum threads and posts, how you feel about taking medications. Of course, not everyone has a side effect from a medication and not everyone will have the same side effect from the same medication either.

So I question, why this thread? You already know what you are going to do. You knew before you made this post.

Thank you, naneiben. Great reply! :wave:

Always learning. What is the difference?

Basically the drug has already been approved and on the market for a study to be done. Not so with clinical trials.

FAQ: ClinicalTrials.gov - Clinical Trial Phases

https://clinicaltrials.gov/ct2/about...s/learn#WhatIs


This would be a clinical trial:

Just say no
 

Just say NO. An experimental drug test? You, who try to live simply & eat purely?

When my own mother, now deceased twelve years, was in the end stages of Alzheimers (the last 18 months in a skilled nursing home, in the Alzheimers/Dementia wing) I was called by a physician doing the same type of studies you mention above.

I listened politely.........but told him in no uncertain terms that I could not put her through it.........explaining to him how the Aricept had NOT been for the better after being prescribed by her specialist on aging.......so no "experimental" drugs for mom.

I also told him that I had read his article in our local newspaper which led me to look up this "experimental drug"......& its horrific side effects.....such as liver damage & on & on.......

He was moderately surprised......saying "Well, I see you've done your research".........I told him I just could NOT put her through that........I also knew they only offer these drugs to those at the end.

A few years earlier, her physician had put her on Aricept.......she immediately lost her appetite & stopped eating......dropping back down to 85 lbs. from the 100 lbs........these are common side effects which are known. She also got dizzy from it. After a short hospital stay where they put her through battery of tests, her internist (who was our neighbor as well) told me, "Your mom is in amazingly excellent health for her age (except for the dementia); her lungs are those of a younger person, her bones, her heart, etc., etc., etc........she was still walking briskly until the Aricept.

Long story short........after I said NO to the experimental drug, she passed away about a month later.......peacefully with palliative care, comfort care........at age 91. I just couldn't see an experimental drug.......with her as a test subject.

Initially, I took care of her for six years in our own home.......she had "Sundowners Syndrome" & would get up in the middle of the night & walk all around the house getting into mischief. I won't go into that......but I could write a book, believe me. I prepared her meals, bathed her, dressed her........etc. I wish I would have kept her at home, truthfully......as she was content.

However, once at "daycare" (8 a.m. to 3 p.m. five days a week) she fell over a parking log.........hurt her arm (the activity assistants were not really watching these elderly folks); after that she could no longer get into the bathtub or out of the bathtub, so I began showering her.........but she was AFRAID of the shower.

Long story short (again)......a nice community care home, along with lots of her old friends from the senior center, was her new "home" (after being with us for six straight years). This is where the Aricept "dizzy incident" happened.........she rose from her chair; a painter heard her say, "Oh, I feel dizzy" & they called an ambulance........later after numerous brain wave tests, internal tests, everything a hospital does...........the doc called to tell me she was amazingly HEALTHY.........

It wasn't till she hit 90 that she went to a regular nursing home.
At the end of that she was in diapers & a wheelchair.......that's when the experimental drug was suggested. He was a little PUSHY however finally accepted that I wasn't going to put her through it......obviously there was NO TURNING BACK.

Believe it or not, I'm not worried about getting Alzhiemers.

Lots of our friends parents had it........& were all in the same nursing home........the nurses & aides were all angels of mercy.

Her passing was very peaceful.
Every day I wish I had her back. There is no love like a mother's love.
Our dear cousin & friend just lost her 95 year old mom to Alzheimers in New Jersey. Wake is today. Funeral is tomorrow.
Huge second snowstorm supposed to hit them AGAIN.......and also Boston area...........as well as us, again.

Thanks for your reply. I did say no. Not in so many words but right after the very first reply on this thread (from naneiben) I called Compass Research and cancelled my appointment. I never thought there would be so many well meaning replies. By the time I came back to this site, I was surprised to find 3 pages of replies. Thanks!

You wonder why, of all people, I made an appointment in the first place. Well, it's just the strange way that it happened, I was caught off-guard. My first thought, as I read the ad in the newspaper, was that it would be an observational lifestyle study and I was excited about the possibility of being a part of it. I've been a participant in one study that has been going on for nearly 20 years now and I like being a part of it (NIH_AARP Diet and Health Study).

When the call came I was surprised to hear that it would be an Alzheimer's study and would involve taking an experimental drug. The very first thing I said to the woman caller was: "I think I should just forget about it because I'm against taking drugs." And it was as if she didn't want to take no for an answer because she then suggested that I get tested first and then make up my mind after talking to the doctor. She reassured me that I would be under no obligation to participate in the study.

So, at that time, I thought, okay, I'll get a free gene test for Alzheimer's. And that was the hook that drew me in. Only a short time later did I start thinking that it might be a bad idea to find out if I have such a gene. And I began to wonder if the doctor would use that test as a way to reel me in as a participant. (Sort of like the car dealer who offers 5 gold coins if you come in to take a test drive.)

Only today did I learn that the results of the gene test would not be disclosed to the prospective participant or to the doctor.

I think, no matter what the OP ultimately decided, this topic made for an interesting, thought provoking discussion. Any hostility or snarky personal remarks were, IMHO, uncalled for. Namaste.

You made a very wise decision
 

Ultimately, you made a very wise decision. No harm in exploring.

p.s. to earlier post.......

Not all cognitive issues are Alzheimers Disease.....

We have a friend in her 50's who's life has been saved via high tech radioactive isotopes being injected into her liver, etc., etc. for treatment of endocrine cancer these past seven years...........however, the physicians admit that the treatment is now the cause of her "cognitive" downturn........similar to Alzheimers or dementia but not exactly that. She's been treated at a top teaching university, one of the very best in the nation......... Unfortunately, her reasoning abilities, her comprehension, etc. have greatly declined. She is still on borrowed time.

So, if we don't get one thing.......we will surely get another.

Here is the Alzheimers website:
Alzheimer?s Foundation of America - Alzheimer?s Disease and Caregiving Support



Alzheimers Foundation of America

It is an individual choice on doing the study and has been discussed on previous posts. I'm interested in knowing if it is a study with the use of medication vs placebo is sanctioned by the Alzheimer's Association (alz.org) or a drug company. I'm rather surprised the Alzheimer's Association would advertise in a news paper when there are thousands of people that volunteer on their site to help with a cure. Not all require the use of medication.

I don't think the Alzheimer's Association was ever mentioned. The ad in the Daily Sun, which I no longer have, only mentioned Compass Research, as I recall. The address they gave me for testing was: Compass Research, 708 Physician Ct, Leesburg, FL 34748.

If you go to their website, "Compassresearch.com", they have a section for sponsors. They do research for sponsors, which I assume could be a drug company.

Thanks for the update. You're a deep thinker and I'm certain you will think twice before putting something in your body that is counter productive to your healthy life style. If you have concerns about developing the disease, the Alzheimer's Association is a wealth of knowledge (with what is known) and there are legitimate sites that you can do timed testing to see how the brain cells are performing. More fun than fact, but how fast you respond with a correct answer is a challenge I find entertaining. Once it becomes a frustration, I may not look at it in a different light!