Brain Donation
Download our brochure on brain donation.
Why is brain donation important?
A brain autopsy is the only way to confirm the cause of dementia. Researchers rely on information from autopsies of donated brains to learn how Alzheimer's Disease and other dementias affect the brain. By understanding these diseases better, researchers hope to develop better treatments and cures for them.
Who can donate?
Any current or past patients or research participants at the Memory & Aging Program are welcome to donate.
What should I consider when deciding to donate?
It is important to discuss your wishes with your family members and to include them in your decision-making process. You should also ask your doctor any questions you have when deciding to enroll or after enrolling. It is always your decision whether or not to donate your brain.
Is brain donation compatible with my religious beliefs?
This is an important question to many potential donors and their families. Most religions allow and even encourage donation of the brain and other organs for research, but you may wish to discuss your decision or questions about brain donation with your religious leader. For a list of statements from various religions on tissue donation, click here.
What do I do if I decide to enroll?
If you choose to donate your brain, you must notify your doctor. You will fill out some forms stating your wishes. Your family members will also receive information on whom to contact at the time of your passing. It is important to make plans in advance because families have other important concerns to deal with at the time of a loved one's passing.
Who can give permission?
Rhode Island law lets a person give consent for autopsy (including brain autopsy) while still alive and also authorizes close relations to do so after death or if a person becomes incompetent.
What happens at the time of donation?
Your family must notify us of your death shortly beforehand or within two hours after. Your body will then be taken to Rhode Island Hospital and the brain will be removed. Afterwards your body will be brought back to the funeral home.
Can I have an open casket funeral?
Absolutely. The brain is removed in such a way that your face and hair will not be affected. Funeral directors and morticians are familiar with the process and will know what to do to make you look your best.
Will brain donation be helpful to my family?
Your family will receive a written report on your autopsy. The report tells the diagnosis, summarizes other findings, and includes a number to call if there are any questions. Because Alzheimer's Disease and other forms of dementia sometimes run in families, your surviving family members may find it helpful to know for sure whether you truly had the disease. This knowledge allows them to seek help and make plans for the future.
Is there any cost?
The autopsy is free, but certain transportation charges may apply.
One family's story
"My husband was diagnosed with AD in 1994, and came to the Memory & Aging Program because of a suggestion from a friend. We both enrolled as a team. It took an effort for me to make the decision, but so many members of his family were troubled with this ailment…
"Because we had children, we made arrangements for brain donation since I felt that they may be at risk. My giving his brain may help the facility learn more of what causes Alzheimer’s. I was contributing to that research.
"He was taken to the funeral home after he died and because we had made arrangements in advance with the funeral home director he was transported to Rhode Island Hospital where his brain was removed. He was back at the funeral home that same day. We had an open casket for the wake and people told me how wonderful he looked.
"I would suggest to people thinking about donating, don’t feel guilty about it and don’t feel bad about it. Take personal feelings out of it. It’s for the benefit of others. He was my loved one. I really loved my husband, but with so much of that in his family, I had to do this. I talked to my children and they all agreed.”
