Caregiver guide
Brain donation: questions and answers for families
Brain donation is a gift made after death to help researchers understand Alzheimer's disease and other dementias. In Central Florida, families arrange it in advance through ADRC and the State of Florida Brain Bank. The family receives a report that gives a definitive diagnosis.
Your brain: a priceless gift
Talking about brain donation can feel hard. Many families aren't sure where to start or what it involves. These are the questions families ask us most, answered plainly.
The Alzheimer's & Dementia Resource Center (ADRC) in Winter Park is one of only two entry points in Florida for the State of Florida Brain Bank, in partnership with Mount Sinai Medical Center in Miami. We coordinate brain donations across 22 counties in Central and North Florida, and we stay with each family from enrollment through the final report.
One caregiver told us: "Thank you for giving my mother her last hoorah, a gift to science and a gift to our future."
Why are brain autopsies so important, and why are brain donations needed?
The word "autopsy" comes from a Greek word meaning "to see with one's own eyes." A brain autopsy is essential for both research and diagnosis.
Researchers need to study the brains of people whose health was closely followed by a doctor. Medical records hold vital clues about how the disease began and progressed. Comparing that history with the changes found in the brain tissue helps researchers better understand dementia.
Until a reliable test is found, the only way to confirm Alzheimer's disease or a related dementia with certainty is to examine the brain after death. A pathologist looks at the brain tissue under a microscope for the telltale signs of these diseases.
Who can legally authorize a brain autopsy?
The person's next of kin gives consent for the autopsy, in this order:
- Spouse
- Adult children
- Parents
- Brothers and sisters
- Grandparents
- Aunts, uncles and first cousins
- Legal guardian
If there is a spouse, the spouse gives consent. If not, the decision moves to the adult children, then to parents, and so on down the list. The person giving permission will be asked to sign a consent form for the procedure.
Will our family receive a report of the findings?
Yes. The person who gave permission for the autopsy will receive a neuropathology report, usually about 4 to 8 months later. ADRC sends the report to the family so you can review it with your loved one's doctor.
Learning the exact cause often gives families a sense of closure. And if more than one family member has had a similar illness, the report gives the family and their doctors important information about possible genetic links.
The report describes the type of dementia that was present. It does not determine the cause of death.
What effect will brain donation have on funeral arrangements?
None. The Brain Bank works with any funeral home your family chooses. Removing the brain tissue leaves no visible marks, so you can still have an open-casket viewing. Because the autopsy is done within hours of death, it won't delay the funeral.
Brain donation after death: when to make arrangements
Make arrangements well in advance. People living with dementia may live for many years, but it's important to plan early.
Family members need time to talk about the decision and work through any concerns. Because this is a research program, consent forms must be signed and the research coordinators need time to collect medical records. Enrollment typically takes six to eight weeks, and your loved one must be registered before death.
Many families tell us they wish they'd talked about end-of-life wishes sooner, while their loved one could still share what they wanted. If your person can take part in the conversation, raise it early and simply, alongside other plans like choosing a funeral home.
Who can donate to the State of Florida Brain Bank?
The donor must be registered before death and must live in Florida both at enrollment and at the time of passing. They must also:
Have a confirmed diagnosis of Alzheimer's disease or another age-related dementia that has been in place for at least 12 months.
Have completed a comprehensive neuropsychological evaluation, including brain imaging.
Have been diagnosed by a neurologist, psychiatrist, or medical director of an Alzheimer's Disease Initiative (ADI) memory disorder clinic.
Have a local funeral home chosen in advance to coordinate transportation at the time of donation.
How do I arrange brain donation in Central Florida?
Call Ana Saavedra
Call ADRC's Brain Bank & Volunteer Management Manager at 407-964-5234 or email ana@adrccares.org to learn about the program and begin registration.
Gather medical records
Have the diagnosis, the neuropsychological evaluation and brain imaging ready. Our guide to how dementia is diagnosed explains these tests.
Choose a funeral home
Pick a local funeral home in advance. It will coordinate transportation at the time of donation.
Complete registration
Sign the consent forms. Enrollment typically takes six to eight weeks and must be complete before death.
At the time of death, call 407-646-9864
Report the death of your registered loved one as soon as possible.
Receive the report
ADRC sends the neuropathology report to your family to review with your loved one's doctor.
About the State of Florida Brain Bank
The State of Florida Brain Bank Research Program was established in 1987. It's a program of the Florida Department of Elder Affairs, funded through the Alzheimer's Disease Initiative. ADRC has been part of it from the start. Read more in our history.
ADRC is one of only two organizations that provide the Brain Bank program in Florida. Together, the two sites cover the whole state and work closely with memory disorder clinics across Florida.
The Brain Bank's research priorities are to:
- Help find a cure
- Collect the brains of people with dementia, and of healthy individuals for comparison
- Identify groups and patterns of symptoms
- Improve tools for diagnosis and treatment
- Understand what happens in the brain, including the role of genetics
- Give families a definitive diagnosis and share findings with the medical community
- Educate the community about Alzheimer's disease, related dementias and the Brain Bank
For enrollment details and contacts, visit our Florida Brain Bank page.
What has Brain Bank research found?
More than 50 research studies have reported findings based on the State of Florida Brain Bank. Among them:
- Alzheimer's disease is the leading cause of dementia in every age group from 50 to 90.
- Brain Bank research helped refine how Lewy body dementia is diagnosed. It's now known as the second leading cause of dementia, and it's more common among men.
- A family history of dementia is a risk factor for both Lewy body dementia and Alzheimer's disease.
- Vascular disease plays a part in about a quarter of dementia cases over age 70. Diagnosing Alzheimer's is more accurate when vascular causes are ruled out.
- Frontotemporal dementia is more common in younger adults, often starting in their 40s and 50s. A change in one gene, called GRN, is its most common known cause.
- Brain Bank participants helped confirm that a new type of PET brain scan can show amyloid plaques, a hallmark of Alzheimer's, in living people.
Each of these findings started with a family's gift.
Support for your family
Deciding about brain donation often comes at the same time as other hard caregiving decisions. You don't have to carry it alone. The Alzheimer's & Dementia Resource Center (ADRC) offers free help:
- Care Navigation, one-on-one sessions to plan for later stages and end-of-life wishes.
- Caregiver support groups, in person and online, with people who understand.
Just received a diagnosis? Our guide to what to do after a dementia diagnosis walks through the first steps, including when to think about brain donation.
Need someone to talk to right now, day or night? Call the Alzheimer's Association 24/7 Helpline at 800-272-3900. In an emergency, call 911.
Brain donation: more questions
Can you donate your brain to another person?
No. A brain can't be transplanted. Brain donation is for research only. The donated tissue is studied to learn more about Alzheimer's disease and other dementias, and to give the family a definitive diagnosis.
Is brain donation the same as whole-body donation?
No. Whole-body donation gives the entire body to a medical school or program. The Brain Bank program involves only the brain, through an autopsy, and your family can still hold a funeral and an open-casket viewing.
Do you get paid for brain donation?
No. Brain donation is a gift. Donors and families are not paid. If you have questions about any costs, such as funeral home transportation, ask Ana Saavedra at 407-964-5234 when you enroll.
Can someone with Lewy body dementia donate their brain?
The Florida Brain Bank accepts people with Alzheimer's disease or another age-related dementia who meet the program's requirements. Call Ana Saavedra at 407-964-5234 to check whether your loved one qualifies.
Can we register after our loved one has died?
No. Everyone must be registered before the time of death. Because enrollment takes six to eight weeks, please call early.
Does brain donation determine the cause of death?
No. The examination shows what type of dementia was present. It does not determine the cause of death.
Is there brain donation near me in Central Florida?
Yes. ADRC is the Central Florida enrollment point for the State of Florida Brain Bank and serves 22 counties in Central and North Florida. Call Ana Saavedra at 407-964-5234 or email ana@adrccares.org.
Who do I call when a registered donor dies?
Call the death reporting line at 407-646-9864 as soon as possible. This line is only for reporting the death of someone already registered in the program.
Download: Your Brain, A Priceless Gift
Keep ADRC's brain donation questions and answers on hand to share with family members as you decide together.
Free help for dementia caregivers in Central Florida
The Alzheimer's & Dementia Resource Center (ADRC) in Winter Park, Florida, offers free help for caregivers in Orange and Seminole counties and coordinates the State of Florida Brain Bank across 22 counties. Call (407) 436-7750, Monday to Friday, 8:30 AM to 4:30 PM.