When my father died, we found it difficult to donate his brain for research, and to request an autopsy. Some of that difficulty was because we hadn’t made arrangements in advance. Earlier this week, I interviewed Nancy Teten, Assistant Director of the Clinical and Translational Sciences Institute at the University of South Florida. She coordinates the Byrd Institute Brain Bank here in Tampa Bay, and I talked with her about what you should do if you’d like to donate your brain for research. Emelyne Cherenfant, a USF social worker and Raelynn Wapinnsky, an intern, sat in on the discussion.
Q: Why would someone consider donating his brain to the Byrd Institute or other organizations? What are the advantages?
A: When someone has dementia, families often want to make sense of the disease, and of their experiences. They may want to know why someone had hallucinations, why he didn’t know family members, or why he had a personality change. With brain donation, families receive a copy of the autopsy report at no charge. The report might be a bit technical, but I can help them with it. This can be a powerful way to close a really long journey.
Donating your brain is also a way to leave a legacy for future generations, and to give something back.
Q: Are there any disadvantages to donating a brain?
A: In our experience, most people don’t see any disadvantages. We encourage people considering brain donation to talk it over with their families and with their spiritual advisors. We’ve found that most families and most faith communities accept brain donation.
Sometimes people have privacy concerns. We may share brain tissue with specific researchers within the Florida Alzheimer’s Disease Research Center we’re part of (including Mayo Clinic in Jacksonville and the University of Miami and Mt. Sinai Hospital in Miami), but all personal information is removed from medical records. Privacy is protected.
Q: I’ve heard that people worry brain donation will delay funeral arrangements, or prevent a family from having an open casket funeral.
A: Brain donation doesn’t affect funeral arrangements. When a person who has made arrangements to donate his brain dies, the family has instructions to call us as soon as possible. We are on pagers 24/7, 365 days a year. We have a “diener” who will go immediately to the funeral home. Because it’s important for us to get the brain as close to the time of death as possible, this process doesn’t delay a funeral.
Some people are squeamish about the details, but I can tell you that the incision is not visible, so there are no problems when families want an open casket service.
Q: What kinds of brains are needed? Just the brains of people with memory loss? Is there an age limit?
A: We need “healthy” brains as well as brains of people with neurodegenerative diseases and memory loss. We need brains from people of all ethnicities and education levels, male and female. Our minimum age is 50, but that may vary from brain bank to brain bank.
Q: What arrangements should you make if you decide you’d like to donate your brain?
A: First of all, discuss this with your family. We frequently get calls from someone saying “My mother just passed away, and she wanted to donate her brain.” We’ll attempt to make it happen, but we typically cannot make those arrangements last minute. When this happens, it’s difficult, because people are not able to respect the family member’s wishes.
If you and your family are in agreement, we will ask you to sign consent forms. People sometimes tell us they’re already registered as organ donors, but there are separate forms you need to sign for brain donation. If you have memory loss, we may also ask someone you designate to sign a proxy consent form too. This person considers your wishes similar to the way a health care surrogate or someone with durable power of attorney would, and is typically a spouse or partner.
When you’re talking about brain donation, it’s a good time to discuss funeral arrangements with your family as well. We will ask you about this when you come in to sign consent forms. When a person enrolled in our program dies, sometimes a family member will notify us, but neglect to tell us which funeral home is handling the arrangements. We work with all the local funeral homes, but it’s helpful if we know where to start!
Q: Any closing thoughts?
A: Sometimes the greatest contributions we can make are the silent ones.
Note: If you’d like more information about donating your brain to the Byrd Institute, contact Nancy Teten at 813-974-4355 or firstname.lastname@example.org. For a list of brain banks in other areas (mostly in the U.S.) see http://www.alzforum.org/dis/dia/bra/default.asp.