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My 88-year-old mother is in a nursing home in the later stages of Alzheimer’s disease, having been experiencing it’s effects over the last 10 years. Her only surviving sibling, a sister who is seven years younger also has Alzheimer’s disease. One of my fathers three siblings had Alzheimer’s disease. I am all too familiar with the devastating impact this disease has on an individual’s ability to navigate the world, the strain it puts on families who need to make difficult decisions and how 24/7 care will drain a substantial nest egg.


I have done fundraising for the Alzheimer’s Association and this year collected over $3000 for the cause. I would like progress to be made to lessen the impact of the disease on others and I’m sure my mother would feel the same if she were cognitively able to understand and make the decision herself.


This particular study would need a blood sample of my mother and her sister to look at DNA. They would also need their medical history. An autopsy to definitively determine an Alzheimer’s diagnosis would be appreciated and the collection of tissues for potential research and other studies in the future can be part of it. They do at least try to cover some of the cost but it is uncertain whether all of these costs would be covered.


My time is already limited overseeing my mother, working a full-time job and trying to have a life but I know this is important. There is also a feeling that I would be desecrating my mother’s body which feels wrong. Can anyone speak to that part of it also? I know I would have to get over that and also convince other family members to be on board.


I also need to check out this link:


https://alz.org/alzheimers-dementia/research_progress/clinical-trials


that the Alzheimer’s Association has to notify individuals of research studies that need participants. Perhaps I would find another study there that would seem more like the right one to do.


So I’m in the middle of figuring this out and would love to hear from others on the subject.


~ Thank you.

Today I called my cousin who would need to involve her mother in this research project if I were to go forward with it. (As I wrote, this particular project requires the involvement of two blood related family members who have Alzheimer’s disease, and that would be my mother and her younger sister).  My cousin is willing  and seemed happy to “help the cause“. So my next step will be to call for more information on the study and then take it from there.

My cousin and I were glad to talk. Her mother is living with her and her mother has declined since we were last in touch. I wish my cousin were on the internet, because if so I would send her to this website! But talking on the phone was good as we were able to reminisce together about very happy times with her mother and my mother at my grandmother’s house. Cherished memories and very special people ~

Nancy, from my current understanding my mother would experience very little discomfort with this research project. The nursing home has monthly visits from a phlebotomist and blood would be drawn at that point. I would not consider transporting my mother outside of the nursing home  as that would be traumatizing for her and necessitate hiring a wheelchair transport.
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Reply to Cristal
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It's an individual thing and you're doing the right thing getting all the information upfront to examine. (myself, I would have no hesitation. I regularly participate in studies for Type I diabetes, as my endocrinologists are with a major medical school.) I know that I would do what I think my LO would want. And, that she would want to help any way she could, as long she could have her body eventually for burial. So, I would operate with that in mind. We've never had any issues with autopsies, but, if you do, it may not be feasible.

I actually called to see if my LO would qualify for study after death, but, neither of the nearby medical schools were accepting at that time.

It's great that you have done so much work for this cause. If this study involves too much of your time, I'd accept that. Maybe, another study would fit in better. You've already done a lot.
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Reply to Sunnygirl1
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Will giving blood and the other things your mother would have to do while she is alive stress her out? My mother (with dementia) hates doctors, hospitals and shots. I don't force them on her.
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Reply to NancyIS
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IMHO, ANY effort on your part is going to be beneficial.
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Reply to Llamalover47
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Talk to several folks doing studies. The doctors will probably be more research-focused than patient care focused. The person you need to get answers from and get along with are the research nursing staff. The staff visits the patient/family. They gather bloodwork, write down observations, communicate with the research doctors... Good ones should be able to answer all your questions - or get you the answers - and treat everyone with respect and kindness.
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Reply to Taarna
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My wife was enrolled in such a study early on in her dementia. We (the study and us) parted company on bad terms. I found the docs to be ivory tower types that were not really in touch with real life. There were separate interviews and they were comparing my answers with those of my confused wife. The questioning was aggressive. Very! Three on One. I stood my ground. It was obvious my PSW could not. In fact I had to back them down with questions of my own. They believed her and not me. They had a preconceived picture and tried to justify it.
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Reply to qmnpxl
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I think that you answered your own question, mom wouldn't want anyone else to go through this if she could do something about it.

This is how it gets done. Research. We all benefit in one way or another from people before us that participated in research studies.

I am an organ donor and I am willing to have my body be donated for research, haven't decided on what avenue, I will be completely done with it at that point. So have at it, if it can help one person avoid the suffering then I think it is a good idea.

I am sorry that you have lost your mom and other loved ones to this brutal disease. Hugs for even considering helping in such a way.
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Reply to Isthisrealyreal
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worriedinCali Nov 19, 2019
You’re exactly right and you explained why it’s not true that only the researchers profit from this. We can all profit from research. The last thing my MIL did before she died was participate in a research study to see if there pulmonary fibrosis can be genetic. She is the 4th person in her family to die of PF. By the time we were told about the study, she was entering hospice and in bad shape. She was dehydrated fought hard to drink water so that her blood could be drawn but they just couldn’t get a needle in to her veins. The researchers said they could test her saliva so again-sorry TMI- she fought hard to spit up enough saliva to be sent off for testing. This was about 3 weeks before she died. We weren’t about to push her in to doing it but....she insisted, she said she had to do it for her grandchildren, so that they won’t have to go through what she went through! The comment below about researchers being the only ones who profit from this really struck a nerve with me because of this. It’s simply not true. We cannot find cures and save future generations without research!
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I really appreciate getting so many different viewpoints. 

I was hoping to call today to get more information about the study I described or scope out others but one thing after the other got in the way.  I did spend several hours at the nursing home with my mother listening to the musical entertainment scheduled there this afternoon. It was a wonderful, warm experience and the best way I could’ve spent that time.

While I was at the nursing home I also spoke with the husband of a resident who highly recommended looking into hospice for my mother. He said it has been a godsend for his wife, providing additional services and paying for medications that wouldn’t have been covered otherwise. So that will be number one on my list to pursue right now, and scoping out a research study will have to take a step back for a little bit.

Cetude, the research study I mentioned would require a small amount of blood to be drawn from my mother’s arm by a phlebotomist that would visit the nursing home but otherwise would not subject her to trauma.  I would need to provide medical history to the researchers, and after death perhaps there would be an autopsy and the donation of tissue from her brain.

I agree with giving strong consideration to the question of whether I think my mother would agree to participating in a research project like this one that might help prevent others from suffering the same fate. And although denial was the number one tool in my mother’s tool chest for dealing with this disease, there can be no denial now. The disease Is slowly taking everything away from her and she wouldn’t want this to happen to anyone else if she could do something about it. 

I will also take privacy and security issues seriously in any research study I consider. I will ask to review all consent forms that need to be signed and never sign an indemnification clause.  And I will get as much information as I can about the companies involved and what their purpose is.  I know that in this day and age we need to be very careful about this.

~ Thank you ~

I have been reading discussions on this website for months now and this weekend is the first time I have joined into a conversation or started one.  I think it is an excellent resource and a helpful and supportive community.
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Reply to Cristal
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Once you get a loved one in a nursing home, they won't have a nest egg left. But I don't see any point subjecting someone with end-stage Alzheimer's with research. If they test out medications, it could have very adverse side effects. If they are put in a different environment, they will get agitated because of the change...they are confused enough without such a change. Either way it's pretty much abusive to use them as a Guinea pig in my opinion. I wouldn't do it. I would never let anybody test or do research on mom. the only people who will profit from this are the well paid researchers. Alternatively, you can donate her body to science after death--that will cover all costs for cremation and you get two free death certificates and they even pay for transportation.
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Reply to cetude
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I go back to my usual line and say what would you mom want to do if she could make a decision. I would do it for my mom What a great way to know she’s part of preventing or to end this horrible disease
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Reply to jan135
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Hi Crystal. My FIL died only a couple of weeks after moving into a nursing home with MIL, and the law required an autopsy because of the timing. This also results in ‘desecration of the body’, but there was no choice. My DH as executor did not tell the siblings – no point in upsetting them. For various reasons FIL wanted his body donated to medical science, but it wasn’t possible after the autopsy so it had to be cremation. However clearly FIL wasn’t worried about desecration. No-one in our family agrees with embalming, open coffin viewing, or kissing the body at the funeral, which can be another issue. I think FIL would have risen from the dead to protest against lipstick and embalming make-up!

I and DH have taken part in a whole range of medical trials, and I would strongly support going with that if you can.
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Reply to MargaretMcKen
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Others have offered good answers; I have only a legal issue to raise.     Although I know that medical practices are utilizing online so-called "portals" for storage of their patients' medical records, for the first time I've encountered one that has hired a company to maintain patient's records and requires the patient to hold harmless, indemnify and defend that company, for any reason whatsoever. 

I'm a bit reluctant to provide too much detail, but suffice it to say the company's statements address use of medical data for marketing and commercial purposes.

So, if you go ahead with the study, ask to review ALL consents that would have to be signed, watch for commercial companies retaining the data either in their data banks or cloud storage, and by all means NEVER sign an indemnification clause.  

And this would apply to any and all subcontractors, as I assume data will be collected by one entity and delivered to another, a lab, for analysis. 

Find out all the companies involved and whether or not they're medical or just medical parasites gathering data for storage...and sale.  

It isn't worth it to put your livelihood, savings and fortune on the line for people exploiting medical records for commercial purposes.
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Reply to GardenArtist
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Every study needs to get approved by an institutional review board called an IRB. This includes international studies. They are expected to explain risks and benefits of all procedures under the highest standards There is no publication that will accept a study without that approval anywhere in the world. You will first be determined if she is the right candidate for the study. If the approved study is to include protected patients, that issue is covered through the IRB review. If you are her spokesperson they will hand you an informed consent form. So go ahead and ask.
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Reply to MACinCT
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Cristal, I agree there is no wrong decision here, but the only way to cure or prevent ALZ will be to study it and that requires people. I completely understand your discomfort with volunteering your mother for things like blood tests and tissue preservation. If you could go back in time and ask her do you think she'd say yes? Participating in the study is sort of like donating her body to science in advance. At her age I don't think she is a good candidate for organ donation, so maybe donating to science when she passes specifically to an ALZ research clinic may be a compromise you can live with? Bless you for even considering participation.
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Reply to Geaton777
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Cristal, I commend you for giving this matter deep thought. I don't think any decision you make about it will be wrong.
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Reply to Rosered6
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Sometimes words do not accurately convey our meaning and “desecrate“ is perhaps a stronger word than I intended.

In this particular study my understanding is that it would be looking at the genetic makeup and medical history of family members with Alzheimer’s disease, but there is also another aspect (which perhaps could be opted out of) where tissues can be kept alive in a donor bank to be distributed as needed to future studies.  Something about that seems a little creepy to me and I also don’t know if I would run into blow-back from my older brother due to some part of his religious beliefs.  I would also need to see if my cousin is willing to provide medical history and a blood donation from her mother, as two blood related family members with Alzheimer’s disease are required for this study. I do need to make a call to learn more about the study and also call “trial match“ to see what other study options there are. Perhaps I can do that tomorrow.

I am not a “graveside weeper” and I have no desire to preserve a body for all eternity. I have been looking, for both my mother and myself, into some type of more green option for whatever bodily remains are left over after potential tissue donations. I would want to reduce toxins deposited into the earth and maximize giving back to nature. No embalming.  Nowadays these green options are limited and as we move into the future I hope we will revise our current practices.  Our current method of cremation is energy intensive however I understand there is an additive that can be mixed with cremation remains that would allow the ashes to provide fertility to the earth. I see a sacred aspect to my mother as a person I love, and her body as the vessel for her spirit and I want to be thoughtful and respectful.

Organ donation is a clear and direct path to giving another person the gift of life or the ability to see for instance. The daughter of a former caregiver of my mother’s recently received a donated liver and her daughter now has the chance to live a normal life. There is absolutely no question that, as unfortunate as it was for a person to lose their life, the gift of a healthy liver is a lifesaver for someone else. It isn’t quite as easy to know that there would be a benefit to donating my mother’s tissues to future unknown studies. Of course even trials that fail do teach us something. 

I have thought about participating in a study myself.  If I enter my mother in this study then they are likely to want information about me now and in the future.  Beyond that, I had thought that when my life is quieter and I am not overseeing my mother’s life and care, I would have more time to participate in a study.
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Reply to Cristal
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I have participated in an Alzheimer's disease research study as a member of the "control" group (people with no family history of Alzheimer's disease). I think it would be a good thing for your mom's blood to be used as part of a study. Also, have you considered participating in a study yourself, as a person with a direct family history of Alzheimer's disease?
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Reply to Rosered6
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IMHO, as long as your mother would not be subjected to testing of any kind while she was alive, other than a blood test, I believe this would be a very noble endeavor on your part (and her’s). My mother had Alzheimer’s and I do find myself concerned at times, when I forget something or do something really dumb, that as her daughter, I’m next. More research would be appreciated.

As for the desecration of her body after she passes, I am discussing body donation with my husband after the Holidays. My reasons are not noble though. Body donations do not involve the expenses of a funeral or burial plot. We are not a family of graveside weepers (not to say you are) and I know no one would visit our graves. So, why not? But, you need to discuss your own hesitations with a professional.
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Reply to Ahmijoy
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You need to talk with a professional counselor about your feelings of a body being desecrated. It is not a feeling I share, as an organ donor. I would view the post death examination of her body along the same lines as organ donation, for the better good.

I do not have any family members with ALZ, but would not hesitate to participate in a study that could help to determine the trigger for the disease, how to avoid it and potential treatments.

Dad has particpated in 3 post stroke studies. He dropped out of the last one, it was on cognition and he did not feel he was getting anything out of it. The organizers of the study had had a challenge getting enough people to participate
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Reply to Tothill
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