Brain Donation Program

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 Brochure.

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 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 Center’s HOPE study is eligible, including persons with or without memory problems. If you would like to join the HOPE study, please call the Outreach & Recruitment Coordinator at 617-414-1078.

How will brain 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 dementias. 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 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.

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 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.

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 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.

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 Brain Tissue Donation Program Coordinator, Danielle Borin, at 617-638-8390 as soon as possible to let her 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.

For body donation to Boston University School of Medicine

www.bumc.bu.edu/anatneuro/anatomical-gifts/

For locating brain donation programs listed with the National Institute of Neurological Disorders and Strokes

www.ninds.nih.gov/find_people/voluntary_orgs/vol_org_sub_BB.htm

For More Information, Contact:

Diane Essis
Brain Tissue Donation Coordinator
Alzheimer’s Disease Center
715 Albany Street, B-7800
Boston, MA 02118

Tel: (617) 638-8390
Fax: (617) 414-1197
Email: dessis@bu.edu