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I have received several calls and emails looking to see if we are interested in donation of the dementia brain for research.


There must be scams so I thought I asked you all.


I do feel if it would help fight this sickness it would be worthwhile. We will be cremated anyway.

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@DaveG, I replied to a similar question asked in May, so am cutting-and-pasting the relevant thoughts here for you.

Firstly, do not reply to any unsolicited requests to participate, like those you have been getting...it sounds like a scam. Investigate on your own volition, and if it then seems right for you, go for it. Here is what I wrote last month:

Yes our family has had 100% excellent experience with "Willed Body Programs", so much so that my partner and I have signed up for same. 

I don't know if this list is comprehensive, and it is not aimed to brain dementia donation:
https://ieds.online/body-donation-programs-by-state/

I encourage you to consider this, as the donation of bodies helps medical students, researchers, etc to learn and, ultimately, to help the whole world. We all benefit.

We contacted our local program: they sent us easy-to-fill-out forms, we sent the filled-out forms back to be added to their system, and received a credit-card sized hard plastic ID card to place in wallet, so that anyone can grab the info card from the donor's purse or wallet and dial the phone number immediately upon loved one's death. 

They also sent us big magnets to place on the fridge to alert emergency personnel (who will often look in fridge for medications, and on fridge for emergency instructions) that one has signed up for a Willed Body program. Card and big magnet both make totally clear to phone 24/7/365.

We live in California, so chose the University of California Willed Body program. Even if we are travelling throughout USA, we were told if the unthinkable occurs and one of us dies, to immediately dial the phone number which is answered 24 hours per day 365 days per year, and if the deceased isn't near the "home" research hospital, they will do their best to find another research hospital to accept the body. In our case, we are big travellers so we are comforted knowing the process is easier and better-thought-out than we had realized.

For our family members' deaths, in one case a professional caregiver happened to realize death had occured so immediately phoned the phone number on the card, then phoned us. We jumped in car and were there in less than an hour, and were amazed that the gentleman from the Willed Body program was already there with a discreet hearse-like vehicle (that didn't scream hearse or death, it was just properly capacious) and medical wheeled cot. He waited for us to say a last tearful goodbye, then gently covered our loved one's body, gave his condolences to us so respectfully and truthfully, then trundled the body to vehicle and that was that. We waved goodbye thru tears.

In the other cases, we happened to be with our loved ones as they failed, so knew when they died, and followed the identical procedure as above. In one case the program person asked if they could collect the body in two hours rather than immediately, and that was okay with us; we knew our loved one was finally out of agonizing pain, and was in a better place. I don't know what would've happened if we had refused to allow the delay in body pick-up.

In each case, we within days received a professional letter of condolence and letter of thanks for our loved-ones' generosity in agreeing to participate in the Willed Body program.

In the county where one of our family died, their program has an annual or bi-annual event where the bereaved can all come to honor their dead. In another county they sent us a packet of flower seeds to sow and as flowers come up, remember the beauty of our loved one's life well-lived, and beauty even in death.

In our own case, the bodies are eventually cremated, and there is NOT the possiblility of getting the cremains. That is okay with us, we know our loved ones are healthy, vibrant, happy and beautiful in Heaven. We want to remember that, and not their ill final days.

I hope this helps, and will be thinking good thoughts for you to help you make the decision that sits well with you.
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How to Donate Your Body to Science: 11 Steps (with Pictures) (wikihow.com)

Check University Teaching hospitals in your area. Mayo has a whole website program on donating your body to them (no idea if you must be in their area.).

Check with funeral directors tho know your intention to donate isn't their favorite idea for your body.

Check with Hospices in your area.
Ask your own MD.
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There is nothing morbid about it. This is how doctors learn. If there were no cadaver bodies no one would know how anything works.

Of course there are scams. The fact that there are people out there who would scam about something like this is what's morbid.

If where you live has a medical college, that would be a good place to ask. Or you can start by asking your own doctor,
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I am very much in favor of body donation to a university medical school. There are probably other places that need bodies (and I assume there is a difference between donating a cadaver and donating parts that may be transplanted). If others know about other donation receivers I'd be interested to know about them.

My mother willed her body to our state university's medical school. When she died her body was completely crippled -- almost locked into a dwarfish fetal position -- with osteoporosis. The medical school wrote a very nice letter telling me that her body was not what they needed for cadaver study but they were able to use some bones for bone grafts (dentists do these, I've had a bunch of them) and I think some eye parts. The important thing was that she made the offer and did it with a real, respected place and did the research to go through the right offices; she wasn't responding to some possible scam request. I think a donation needs to be a true donation -- initiated by the owner of the body in question or by his/her legal representative, and done to a place where the practice is defined and there is a sort of protocol and the use is made clear.

I have a couple of MD friends who say that cadaver study was of GREAT importance to them -- particularly one who became a surgeon. We need good docs! Let's support their training! I've already done the paperwork to donate my body to my university medical school. If they don't want it for cadaver study, they are to use any and all parts that can be transplanted or made into grafts and then cremate the rest. My hubby for some reason was (when not in dementia) freaked-out by the idea of being a study cadaver but he asked our lawyer to draw up the request that he be cremated immediately after death. I'm a bit sorry for that because he has dementia and I'm sure the study of brains with any afflictions (Parkinson's, dementia, aphasia, etc) is of great importance. I certainly intend to honor his wishes, though. Thanks for bringing this up, DaveG!
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Given my particular profession. I am very aware that this is necessary for research, and I am greatful to the people and their families who were willing to do that. It was part of my training...so I know it may be a bit hypocritical and selfish to say... I will not personally consider it. It would have been nice to know... exactly what my mother had... if it was just Parkinson's or something else...but the idea of disturbing dead bodies of people whom I knew personally... I am not comfortable with that. I asked my family once, they said no, and I didn't have the heart to push the issue...so we just went the normal route of funeral and burial.

OP; if at all you and your family come to an agreement, and you are sure it will not weigh heavy on your heart...then go for it. A medical researcher or student somewhere in the world will learn from your donation, and your relative would have helped out future dementia patients.
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Okay, I would consider a solicitation for my dead body weird! No, just no!

I am not opposed to donating a body. I think it’s wonderful. My uncle who was single, never married, no children, not religious, did not want a funeral, a memorial, nothing. He suffered horribly with cancer and donated his body to a medical center.

My cousin feels like it’s the best thing to do as well. She could be buried in her family plot but would rather donate her body.

I don’t respond to any solicitors. I refuse to buy anything from them. You can’t sell me anything. I buy what I choose from the source that I want to buy it from.

I wouldn’t hesitate to say, ‘No thanks, please don’t ever contact me again because the answer will always be no.’

Once, I got one of those fake IRS calls over the phone.

He said, “You owe taxes and law enforcement will be knocking on your door shortly.”

I responded with ‘Send them over, I’ll put on a pot of coffee and we can chat.’

He was caught off guard with my answer, then he got mad. LOL 😆 I promptly hung up!

Guess I was bored that day and found him to be ‘free’ entertainment.
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betskand Jul 2023
Loved the response to the fake IRS! Like you I refuse to respond in any way to solicitors. If I have any doubts about, say, use of a credit card, I call the number on the back of the card. It has ALWAYS turned out that the initial contact was a scam. With e-mail if you read carefully there is almost always a little spelling or grammar mistake. I got one from Apple once -- except it was "Appel." Otherwise the logo and type were perfect.

Another "free entertainment" was invented by a friend, who starts angrily saying "Where the hell is my pizza? I ordered it 3 hours ago. And don't leave off the anchovies this time..." The scammer will have hung up by then.

Sorry, this was very much off-subject, but it gave me a laugh and these days I grab laughs whenever I can get them. One thing about the caregiver life is the terrible lack of things that seem funny. And one reason I love this forum is that in addition to useful discussions about difficult questions and real sympathy and support, there are smiles here and there.
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My husbands sister donated her body for research and then when they were finished she was cremated and he received some of her ashes. We didn't even know she did this until after she had already passed but think she did it because she did not have any money for a funeral or cremation and didn't want her family to have to pay for it. Also for research purposes. She was a diabetic.
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I'd talk to your doctor about it, not some weird company that has the nerve to contact you directly. That's just bizarre, and I'd steer very clear of them.

A teaching university that specializes in neurosciences would be the place to donate to if you specifically want to help dementia research. It might be an interesting project to research who does that kind of work.
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I have benefitted from donated tissue from a cadaver. It was a blessing in every way, and I had long been signed up to be a donor before that.

Donated corneas can restore sight to someone who is going blind. A donated heart can provide years of life for someone whose heart is failing (my friend was killed in an accident years ago, and her heart kept a man alive years past when he thought he'd die; her family met him and were able to put their ears against his chest and hear her heart still beating). Another friend received a liver transplant and lived for 12 more years during which he was able to take care of his wife through her cancer treatment, so both their lives were tremendously helped by that donated liver.

I won't be around to meet the people I will be helping by my organ donation. But they will be around, and it's great to know that part of me will be too.
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a friend of mine wants his body donated for research, because cremation after the research is free. in some countries, cremation costs a lot of money.
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This question was asked not too long ago. The problem was, did the person who died want their body donated?

Me, I am not even an organ donor and at my age now, I don't think they would want them. Donating my body... I would not appreciate my spouse or children making that decision for me. I would not make that decision for them.

My cousin has arranged for his body to be donated to a University in Cal. It is probably a teaching University.
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Dave
I agree with Alva in that one wonders about the organization that you were contacted by.

However, if you are interested in donating your body, contact a university that you admire and discuss the process. I would also let them know about the solicitation you received. You might find some useful information.

My uncle and his wife both donated to the same medical school. Aunt had generational Alzheimer’s and Parkinson’s. Uncle said he “always wanted to go to that school”. 😉

They neither wanted a funeral or memorial service which was difficult for some family. It gave me a greater appreciation for how a funeral helps the living.
This family could have truly benefitted.
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I find nothing "morbid" about death or donating a body after one is dead for research. I think it's wonderful, and in hind sight, I wish I would have donated my late husbands body, as his brain would have been worth exploring and learning from, after his massive stroke, seizures and vascular dementia.
I have a dear friend who will be donating her body to our local teaching hospital after she dies. Again I think it's a great idea, and perhaps if more people would do it, especially those with any of the dementias, we would be much farther along with the research in this area and perhaps even find a cure.
One can only hope huh?
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I had the opportunity to tour the cadaver lab at my daughter’s university when she was enrolled there. I went in with great trepidation of what it might be like. The professor that was head of the lab welcomed us and led the experience. The room was bright and calm, the bodies covered with sheets. He explained the lack of any smell was because the air filtration system was designed for complete exchange of air every few minutes. The lighting was designed so that you couldn’t cast a shadow no matter where you were. There were cameras from every angle, as the students could work 24 hours a day and they were well aware there was no chance of any abuse. The students were told at the beginning of the semester to treat the body as they would their parent or grandparent. The work continued over 2 semesters, and the professor emphasized how much knowledge was gained. Afterwards, the families were offered the option of the bodies to be returned or cremated, and also invited to a memorial service. The students had the option to attend the memorial service and invariably came as they felt very close to “their person” by this time. I was very surprised by the peaceful atmosphere of the lab, not at all creepy or strange. Since then, a relative with terminal cancer donated his body. The family was recently invited to his memorial service by the university involved and found it very healing. Any large teaching university can help you in deciding to donate if that’s the route you choose
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CaringinVA Jun 2023
Thank you Daughter for sharing your experience. This is both comforting and beautiful, the way that this is handled.
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Both of my "Dr. Kids" said that they had to share cadavers--sometimes 5 students to one cadaver, and that it made that crucial part of their education sometimes not up to the level they felt it could be.

Once a body is donated, it may be years before it is 'used'. Or it may be prepared and put to use almost immediately. Just depends, I'm sure, on the supply/demand.

(I do not know how to write this without seeming ghoulish or uncaring)..

Studying a brain, in particular, to help to understand dementia and the many other brain diseases is important.

This is a very personal decision. I applaud people who can do this and their families who are supportive of it.

If you have worries that your LO would not be 'honored' by donating his/her body to science, I can say that my kids said they were expected to reverence the life that was lived and the body that they were learning from.
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In general you would not be SOLICITED by any legitimate organization I know of.

Body donation is done. There are MANY uses the body may be used for. Read Mary Roach's excellent book "Stiff" to find out some of them.

If you wish to know about body donation possibilities check with your local University, or google possibilites in your area. Speak directly with the organizations. Ask your doctor.


My brother's friend donated his body. Arrangements were in ahead of time and instructions given. Body was picked up from the home. Ashes were returned to the family approximately one year later. No particular use was specified nor allowed to be specified.

My own Anatomy class had use of a donated body in teaching.
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