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My mother is 77 and has end stage dementia, probably Lewy body. She has been placed in hospice care. We are considering donating her body for research. Anyone have any experience with this?
Mount Sinai has a research program for alzhiemers disease and lewy body dementia. I applied to it prior to her death in 2013. I felt it was one way that she could help others and thats the way she would have wanted it.
Check with your nearest city, county/region, or state/province for companies that accept donations. Consider "tissue donations" companies that will use any body tissues needed for research. They will collect the remains, process donated tissues, cremate unused remains and ship them to you in about a month. Most do not have a financial obligation.
Others have already pointed out that you really should have your mothers ok to donate any part of her body for any purpose. If you are interested in donating her brain specifically then you may want to look into the following organization:
The Brain Donor Project P.O. Box 111002 Naples, FL 34108-1929
Body donation is a wonderful thing. Body donation cannot specifically support LBD or any type of dementia research.
If you want to support LBD or neurodegenerative disease research, best to donate a loved one's brain to an organization that specializes in that particular disorder.
Jane previously mentioned Brain Support Network (brainsupportnetwork.org). BSN specializes in brain donation to support research in LBD, FTD, PD, PSP, CBD, MSA, and early onset AD. BSN handles about 4 brain donations each week. Perhaps once a month, BSN handles joint brain/body donation cases.
For joint brain/body donation, the brain goes to a brain bank specializing in a particular disorder, while the body goes for scientific or medical use. It can be a challenge to find a body donation organization willing to accept a donated body if the brain has been recovered.
Arrangements are specific to a geography (city/state), to the neurological disorder (for brain donation), and to the intended donor and family.
It's wonderful that so many people are considering this! As has been said, make plans ahead of time as lower-stress situations are best.
I am participating in the Emory University Healthy Brain Study, which is looking for volunteers to join their huge study. They do have certain criteria, such as being below age 75 for the initial enrollment. Then they follow your progress by administering various tests, doing an MRI, and a spinal tap every couple of years. (Surprise—Markers for Alzheimer's Disease show up in spinal fluid many years before the symptoms are obvious.) So there are a very few minutes of discomfort but the time commitment is minimal compared to the enormous amount of research the study will do and inspire. This research will help millions and millions of people. Now, to the point: They also asked me if I would be willing to donate my brain for research after I'm gone. It's definitely not necessary to do this in order to participate in the study, but I did agree. They may be interested in studying your mother's brain even though she didn't participate. It's certainly worth contacting them. And if you don't live close to Atlanta, they can probably refer you to other institutions with similar ongoing studies. Here's the link: https://healthyaging.emory.edu/brain-study-annual-report/
I think it’s wonderful that you are participating in this study. I admire your commitment to science. New discoveries are made because of people like you.
My husband was diagnosed with FTD a few years ago. We have everything set up through the Brain Support Network to donate his brain. We are in Ohio but have been told his brain will be sent to Jacksonville, Florida for research. They will send us an detailed report and we will know for sure if he has FTD. The Brain Support Network is very easy to work with and very appreciative of us being willing to donate his brain.
My Dad was just invited to participate in the TN Alzheimers Research Study in Nashville. That was a request they brought up. You might ask your loved one's neurologist for suggestions.
Setting this up now for my wife. https://brainsupportnetwork.org They can arrange brain and/or body donation. Extremely helpful and caring, and they coordinate everything.
Nice for something positive to come out of this terrible disease, contributing to research towards a cure.
Also, a definitive diagnosis with an included pathology report will bring some sort of closure and information for children.
A thoughtful and caring decision by your family IMHO.
This is in South Carolina but the FAQs give a lot of insight that are probably similar to other programs. I don't know if they accept donations from out of state or not. The way she described the process, it was handled with the utmost respect and dignity. Since you say "maybe" Lewy body you may want to be sure a brain bank is involved and this may give you some answers. One thing to be aware is it states that there is a difference between being an organ donor and a research donor so be sure you are connecting with a program that will do what your family prefers.
Somehow I am not comfortable with whole body donation yet, but since my husband has agreed to be an organ donor I am seriously considering arranging for his brain to be donated along with any organs and tissues that can be used. They may be handled by different organizations. Another friend tried to donate her husband's brain but was not able to do so because she had not arranged it prior to his death. Different programs have different policies so definitely begin identifying facilities you may want to consider and contact them now to know your choices. If possible I definitely would be more comfortable making the decisions and arrangements ahead of time rather than when I am dealing with a death.... and of course those decisions can also be rescinded at any time before.
My MIL ( still alive) told us she filled out paperwork to donate her body to the local large medical school at a state university. Try a university or a medical school.
I should add that the university is keeping MIL body for the medical students to learn for 2-3 years . Then the donor program has her cremated and will be sending her ashes to my husband .
Research is the only way to help find cures for diseases. Donating organs (or your body) is a very selfless act. I signed up as an organ donor through the DMV.
Human body parts are such a wonderful gift to those who need them. So not only consider research but donating to those awaiting a cornea transplant, heart, kidney, liver, human tissue or whatever else.
I had a medical procedure years ago that involved the transplant of tissue to repair a defect that I never knew I had before I became sick. I asked where they got it, and the doctor said that no one had ever asked him before. He said, "It's from a cadaver." Some might freak out at this info, but I felt only deep gratitude to the person who donated her/his body for that purpose.
@Titansfan, 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.
Here is a link which gives contact details of three local-to-Kentucky Willed Body programs as well as alphabetically those in other states (I don't know if this is a comprehensive list):
I encourage you and your dear mother 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 toll-free 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.
Your dear mother is probably so frail that travel isn't in her future, but I wanted to write the above paragraph for other people who might be considering donating to their local Willed Body program and wondered what would happen if they were travelling.
For our family members' deaths, in one case a professional caregiver happened to realize death had occured so immediately phoned the toll free 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 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 & your mom for her final days.
My sister was diagnosed with frontotemporal dementia at a major medical center, NIH, in Bethesda. While she was still capable of making her own medical decisions, they asked her to donate her brain to science and she readily agreed. She was quite young when diagnosed and they felt her case was quite unique. She had also worked at HHS her entire career until she had to retire on disability at the age of 50 and that probably had something to do with her decision. She also elected to have the remainder of her body cremated and we carried out that wish as well. I was listed as POC with them for after her death. I was contacted once several years after her death for permission for her brain to be moved from one major teaching hospital to another. I wouldn’t have made the decision to donate her brain for her, but since it is what she wanted to do, I carried out her wishes. If this is something your mother expressed a desire to do, I would contact her doctor or a major medical center near you.
My father has not mentioned to me it is what he wants, but if they want his brain after he is gone for research to get us closer to finding a cure or treatments then I say take it.
I am aware of donating body to a university and of donating through an organization that directs distribution of body, but I have never heard of being able to designate body's use; that doesn't mean it doesn't exist.
I would consider googling for your area about body donation. It might also help to check with LSW in private practice or to check with hospice organizations regarding options. Hope you will update us as to what research shows for your area. This often has to be done considerable time ahead of time. Paperwork and permissions are involved.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
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APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
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APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
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If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
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This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
you may want to look into the following organization:
The Brain Donor Project
P.O. Box 111002
Naples, FL 34108-1929
If you want to support LBD or neurodegenerative disease research, best to donate a loved one's brain to an organization that specializes in that particular disorder.
Jane previously mentioned Brain Support Network (brainsupportnetwork.org). BSN specializes in brain donation to support research in LBD, FTD, PD, PSP, CBD, MSA, and early onset AD. BSN handles about 4 brain donations each week. Perhaps once a month, BSN handles joint brain/body donation cases.
For joint brain/body donation, the brain goes to a brain bank specializing in a particular disorder, while the body goes for scientific or medical use. It can be a challenge to find a body donation organization willing to accept a donated body if the brain has been recovered.
Arrangements are specific to a geography (city/state), to the neurological disorder (for brain donation), and to the intended donor and family.
It's wonderful that so many people are considering this! As has been said, make plans ahead of time as lower-stress situations are best.
Now, to the point: They also asked me if I would be willing to donate my brain for research after I'm gone. It's definitely not necessary to do this in order to participate in the study, but I did agree. They may be interested in studying your mother's brain even though she didn't participate. It's certainly worth contacting them. And if you don't live close to Atlanta, they can probably refer you to other institutions with similar ongoing studies.
Here's the link:
https://healthyaging.emory.edu/brain-study-annual-report/
"Why a donation may be denied
Mayo Clinic makes every effort to accept all program-registered donors. Below are some reasons why the program might deny a donation:
The potential donor has an infectious or contagious disease (such as HIV/AIDS, hepatitis B or hepatitis C, or prion diseases).
The next of kin objects to the donation of the body.
The body is not acceptable for anatomical study (extremely emaciated or extremely obese).
The body has been autopsied or mutilated or is decomposed.
Donations are not needed at the time.
The donor is not in the Mayo Clinic anatomical bequest program's care within 48 hours of death.
The donor was embalmed prior to arrival at Mayo's facility.
Mayo Clinic encourages all potential donors to have an alternate plan in case the donation isn't accepted."
Source: https://www.mayoclinic.org/body-donation/why-donation-denied#:~:text=Below%20are%20some%20reasons%20why,the%20donation%20of%20the%20body.
The Brain Support Network is very easy to work with and very appreciative of us being willing to donate his brain.
https://brainsupportnetwork.org
They can arrange brain and/or body donation.
Extremely helpful and caring, and they coordinate everything.
Nice for something positive to come out of this terrible disease, contributing to research towards a cure.
Also, a definitive diagnosis with an included pathology report will bring some sort of closure and information for children.
A thoughtful and caring decision by your family IMHO.
https://medicine.musc.edu/departments/pathology/division-of-experimental-pathology/ccnl/how-to-become-a-donor
This is in South Carolina but the FAQs give a lot of insight that are probably similar to other programs. I don't know if they accept donations from out of state or not. The way she described the process, it was handled with the utmost respect and dignity. Since you say "maybe" Lewy body you may want to be sure a brain bank is involved and this may give you some answers. One thing to be aware is it states that there is a difference between being an organ donor and a research donor so be sure you are connecting with a program that will do what your family prefers.
Somehow I am not comfortable with whole body donation yet, but since my husband has agreed to be an organ donor I am seriously considering arranging for his brain to be donated along with any organs and tissues that can be used. They may be handled by different organizations. Another friend tried to donate her husband's brain but was not able to do so because she had not arranged it prior to his death. Different programs have different policies so definitely begin identifying facilities you may want to consider and contact them now to know your choices. If possible I definitely would be more comfortable making the decisions and arrangements ahead of time rather than when I am dealing with a death.... and of course those decisions can also be rescinded at any time before.
At the end of his life he was adamant about donating his body in the hope of research finding something valuable from his body.
I deeply admire those who donate their bodies to a teaching hospital like my uncle did.
I had a medical procedure years ago that involved the transplant of tissue to repair a defect that I never knew I had before I became sick. I asked where they got it, and the doctor said that no one had ever asked him before. He said, "It's from a cadaver." Some might freak out at this info, but I felt only deep gratitude to the person who donated her/his body for that purpose.
I have registered to be a donor.
Here is a link which gives contact details of three local-to-Kentucky Willed Body programs as well as alphabetically those in other states (I don't know if this is a comprehensive list):
https://ieds.online/body-donation-programs-by-state/
I encourage you and your dear mother 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 toll-free 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.
Your dear mother is probably so frail that travel isn't in her future, but I wanted to write the above paragraph for other people who might be considering donating to their local Willed Body program and wondered what would happen if they were travelling.
For our family members' deaths, in one case a professional caregiver happened to realize death had occured so immediately phoned the toll free 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 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 & your mom for her final days.
I would consider googling for your area about body donation. It might also help to check with LSW in private practice or to check with hospice organizations regarding options. Hope you will update us as to what research shows for your area. This often has to be done considerable time ahead of time. Paperwork and permissions are involved.