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.
I and DH have taken part in a whole range of medical trials, and I would strongly support going with that if you can.
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.
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
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.
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.
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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