Brain Donation Program
HOPE 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.
Participants in the Health Outreach Program for the Elderly (HOPE) study are asked to consider brain donation after death. Brain donation is important for several reasons. First, examining the brain after death is the only way to reach a definite diagnosis of Alzheimer’s disease (AD) or other dementias. Donation can provide families with closure by informing them that the diagnosis was, without a doubt, AD or a related disorder. Second, brain donation provides valuable information to scientists for important research that will help solve the mysteries of AD 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 AD. HOPE staff are available to discuss the results of the brain examination.
African Americans and Brain Donation
Brain donation is a particularly important issue for African Americans individuals and communities, as well as researchers dedicated to bridging the gap in knowledge about AD among African Americans. African American elders are at greater risk for developing AD than their White counterparts. The reasons for this increased risk, however, are still unknown. Brain donation helps researchers to develop a better understanding of the prevention and treatment of AD among African Americans. Therefore, African American participation in brain donation programs is crucial to developing a greater awareness of the ways in which AD affects African American elders.
African Americans generally participate in both clinical research and organ donation programs at lower rates than White individuals. Since the BU ADRC’s mission includes gaining knowledge about African American issues in AD, we are committed to increasing awareness about the significance of brain donation and related research among African Americans.
Learn more about Brain Donation
We appreciate that brain donation is a serious commitment. We encourage you and your loved ones to contact Madeline Uretsky, with your questions or concerns about brain tissue donation. She would be happy to speak with you and your loved ones about this important decision.
Click here to read about a grandchild who visits a brain bank to find out what will happen to her grandmother’s brain when it’s donated to science. “Each donated brain has a different journey.”
Frequently Asked Questions about Brain Donation
Why is brain donation important?
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 the 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.
Who can donate?
Every participant of the Boston University Alzheimer’s Disease Research Center’s HOPE study is eligible, including persons with or without memory problems. If you would like to join the HOPE study, click here. If you are not a part of the BU ADRC HOPE Study and are interested in brain donation please contact Madeline Uretsky, at 617-358-6027.
How will donation affect my family?
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.
Is brain tissue donation of value from individuals without memory impairment?
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.
Can I be an organ donor and a brain donor?
Yes, donation of any type is always encouraged due to the many benefits it brings. With all types of donations, 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.
Who is the next-of-kin?
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.
Should I inform my next-of-kin of my decision to become a donor?
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.
Does registering as a donor mean that medical treatment will be altered?
No. Registering as a brain donor does not change a person’s medical treatment in any way.
I know the BU ADRC HOPE Study needs to be called as soon after death as possible, but what happens after the program is called?
Once our HOPE Study 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.
What does the neuropathologist do?
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.
Will I need to alter the funeral arrangements?
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.
Is brain donation compatible with my religion?
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.
Will there be any cost?
The HOPE Study 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.
Should family members also become brain donors?
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.
What if I change my mind and no longer wish to donate?
It is fine if you change your mind and decide that you do not want to donate. Please contact the HOPE Study staff at 617-358-6027 as soon as possible to let them know this decision.
Will the results of the examination be available?
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.
Learn more about Brain Donation
We appreciate that brain donation is a serious commitment. We encourage you and your loved ones to contact Madeline Uretsky, with your questions or concerns about brain tissue donation. She would be happy to speak with you and your loved ones about this important decision.
More information:
Ms. Madeline Uresky
Alzheimer’s Disease Research Center
72 East Concord Street, B-7800
Boston, MA 02118
617-358-6027
Body donation to Boston University School of Medicine.
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