Brain Donation FAQs
Frequently Asked Questions about Brain Donation
Participants are asked to consider donating brain tissue after their death. Research using brain tissue helps scientists discover treatments for Alzheimer’s disease. The results of the brain examination will be made available to your family. HOPE staff will be happy to discuss brain tissue donation with you and your family. For more information, please view our brain donation fact sheet.
Why is brain donation important?
Who can donate?
How will brain donation affect my family?
Is brain tissue donation from individuals without memory impairment of value?
Can I be an organ donor and a brain donor?
Who is the next-of-kin?
Should I inform my next-of-kin of my decision to become a brain donor?
Does registering as a donor mean that medical treatment will be altered?
I know the brain donation program needs to be called as soon after death as possible. What happens after the program is called?
What does the neuropathologist do?
Will I need to alter the funeral arrangements?
Is brain donation compatible with my religion?
Will there be any cost?
Should family members also become brain donors?
What if I change my mind and no longer wish to donate?
Will the results of the examination be available?
I understand that I must be in the HOPE study to be a brain donor. Are there other donation options if I can’t be part of the study?
There are several reasons why brain tissue donation is important. First, examining the brain after death is the only way to reach a definite diagnosis of Alzheimer’s disease or other dementia, so donation can provide families with closure by informing them that the diagnosis was, without a doubt, Alzheimer’s disease or a related disorder. Second, brain donation provides valuable information to scientists for important research that will help solve the mysteries of Alzheimer’s disease and improve treatment for future patients. Third, brain donation allows patients and loved ones to provide a gift of hope to future generations in the fight against Alzheimer’s disease.
Every participant of the Boston University Alzheimer’s Disease Center’s HOPE study is eligible, including persons with or without memory problems. If you would like to join the HOPE study, click here.
Brain donation will provide families with a definite diagnosis of Alzheimer’s disease or a related disorder, a process that often brings relief and closure to loved ones. In addition, brain donation is one of the most generous gifts a person can give toward research.
Yes. It is extremely important to study the brains of those individuals who do not have Alzheimer’s disease or other dementia. Brain donation from normal elderly persons allows researchers to determine the exact changes that are related to Alzheimer’s disease and other disorders and which changes are related to normal aging.
Yes, donation of any type is always encouraged due to the many benefits it brings. With all types of donation it is important to obtain the tissue as soon as possible. We encourage brain donation within 24 hours for Alzheimer’s disease research by calling (617)638-8390 or (617)638-5795, pager ID#4061 to alert the HOPE study staff to coordinate brain donation.
The next-of-kin in order is the: 1) spouse, 2) eldest adult child, 3) either parent, 4) eldest adult sibling, and 5) designated guardian. The next-of-kin plays an important role in medical and other legal processes and has the legal right to give permission for tissue recovery for the deceased.
Yes. Getting the support you need to enact your decision occurs only when you make your wishes known. Your next-of-kin will call us upon your passing and will be required to give consent to the donation. We have included in this folder a list of people to inform and sample letters to help you explain your intent to donate.
No. Registering as a brain donor does not change a person’s medical treatment in any way.
I know the brain donation program needs to be called as soon after death as possible, but what happens after the program is called?
Once our Brain donation Program coordinator has been informed of a study participant’s passing, he or she will arrange for the brain donation to be carried out. The donation procedure will be performed in the funeral home and takes less than one hour. Those involved in this process make it their priority to treat the deceased with respect and compassion.
The neuropathologist will examine the brain tissue for evidence of Alzheimer’s disease and any pathological changes of other neurological disorders. The neuropathological examination will definitively establish the neurological diagnosis.
No. Brain donation does not interfere with any traditional or religious funeral arrangements, such as an open casket viewing. Your donation will not delay or complicate your family’s plans for a funeral.
Most religions accept and support brain and organ donation. If you are concerned about donation and your religious faith, please discuss this issue with your spiritual leader.
The Brain Tissue Donation Program will pay for all procedures related to obtaining or transporting the brain and the neuropathological analysis. Your family will incur only the usual expenses of a funeral and burial.
Yes! As a relative of an individual with Alzheimer’s disease, your brain tissue is very important for comparative studies. In order for an individual to become a brain donor, they must also participate in the HOPE study.
It is fine if you change your mind and decide that you do not want to donate. Please contact the Brain Tissue Donation Program Coordinator at 617-638-8390 as soon as possible to let her know this decision.
You have the option of having a report with the results of the neuropathological examination sent to an individual of your choice. If applicable, a diagnosis is provided with the report. It is often a great relief for families to know the cause of the neurological decline, as this may offer a degree of closure to the grieving process. Research findings on donors will not be available; however, results of research studies that may have included information obtained as a result of your donation will be published in scientific journals.
I understand that I must be in the HOPE study to be a brain donor, are there other donation options if I can’t be part of the study?
Yes! A good place to start your search for a donation program is to contact your local Alzheimer’s Association Chapter (www.alz.org). Teaching hospitals and medical schools in your area might have donation programs as well. You might also find helpful information in the links below.
Body donation to Boston University School of Medicine.
Locating brain donation programs listed with the National Institute of Neurological Disorders and Strokes