Brain Donation guide

The guide to

Brain Donation

What brain donation is

Why it matters for diagnosis and treatments

How the process works

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What is brain donation?

Brain donation is the process of donating your brain after death so it can be studied for scientific research. Unlike organ donation for transplant, a donated brain is not transplanted into another person — it’s used to help researchers understand diseases like Alzheimer's and other dementias. If you choose to donate your brain, it will be stored in a brain bank.

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Why is brain donation so important?

Brain donation helps researchers:

Study what actually changed in the brain during diseases like Alzheimer’s and other dementias

Compare brains affected by disease with “control” or healthy brains

Support dozens — and sometimes even hundreds — of studies from a single donation

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Brain donation can help confirm a diagnosis and bring clarity and closure for families

Some dementias can look similar during life. When the brain is examined after death — often through a brain donation program — doctors and researchers can:

• Confirm a diagnosis

• Reveal mixed disease, meaning more than one condition may be contributing to a person’s symptoms
• Help families better understand what changes were happening in the brain and which diseases contributed to their loved one’s symptoms

How donated brains help build better diagnostics and treatments

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Alvera Kan’s brain donation revealed mixed dementia

After Being Patient Founder, Deborah Kan’s mother, Alvera Kan, died the family donated her brain to the University of California San Francisco (UCSF) to better understand what type of dementia she had. The answer came back with not just one diagnosis, but three different types of dementia: Alzheimer’s disease, vascular dementia, and LATE.

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How common is Mixed Dementia?

“In our whole brain bank, I think it was 95 percent of people or more with that pathological diagnosis of Alzheimer’s disease also had other pathologies. For older adults with a diagnosis of Alzheimer’s disease, the median number of pathologies was three. So it’s more the rule than the exception that when a person comes to autopsy and we’re looking at their brain tissue, we see multiple different pathologies that are there and that might be contributing to their symptoms.”

Dr. David Soleimani-Meigooni Neurologist at UCSF’s Memory and Aging Center

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Who is eligible to donate their brain?

• Many programs allow anyone age 18+ to register (including people with healthy brains and those with dementia or other conditions).
• Some programs prefer or require participation in a related research study, but requirements vary

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What types of brains do brain banks want?

“Scientists want to study all types of brains. That includes brains from people who have brain disease, such as dementia or depression, when they sign up for our program, and those who don’t have brain disease initially but then develop it. To understand why certain people get a brain disease, scientists need to compare affected brains to those from people without brain disease. Brain diseases such as Alzheimer’s disease and stroke are among Australia’s biggest causes of death. Addiction, anxiety and depression are major causes of disease.”

Greg SutherlandDirector of the University of Sydney's Brain Bank

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Who can consent to brain donation?

Consent for brain donation depends on state rules and family circumstances. In some states, consent must come from the legally named healthcare agent or power of attorney. In others, a next of kin, such as a spouse, adult child, sibling or guardian, may be able to give consent. The donor’s wishes are important, but because brain donation happens after death, final consent usually comes from the family or legal decision-maker. If the donor cannot give consent, brain donation may still be possible. Families who are unsure should talk through the decision ahead of time.

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How does brain donation work?

1. Before donation

2. After death

3. At the brain bank

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Who can consent to brain donation?

Consent for brain donation depends on state rules and family circumstances. In some states, consent must come from the legally named healthcare agent or power of attorney. In others, a next of kin, such as a spouse, adult child, sibling or guardian, may be able to give consent. The donor’s wishes are important, but because brain donation happens after death, final consent usually comes from the family or legal decision-maker. If the donor cannot give consent, brain donation may still be possible. Families who are unsure should talk through the decision ahead of time.

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Susan Kan Whitaker on donating her mother’s brain

“When your loved one dies, there's so much that goes on. ... My sister, Deborah, asked if we can get an autopsy on my mom's brain. And her primary [care doctor said] ... as long as we have power of attorney, my sister and I, which we did have — we had her health care directive as well — that it wouldn't be a problem. He put us directly in touch with the resource at UCSF, who let us know what we would need. They directly made the arrangements with the funeral home … to get her brain to UCSF. It was something that we hadn't really thought about. We were very grief stricken, but it happened so quickly and seamlessly that it was really quite wonderful.”

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Susan Kan

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It’s a time-sensitive process

Brain donation has a tight timeline because tissue quality matters. That’s why most programs ask families to call the donation center as soon as possible — often within hours of death. In one family’s experience coordinating with an NIH-affiliated repository, they were told to call within an hour, and there were about 18 hours to recover and transport the brain to the biobank. Planning ahead is important so family members know exactly who to contact and what steps to take when the time comes.

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Costs: usually no cost, but there can be exceptions

Some brain donation programs, including donations through the Brain Donor Project and NIH NeuroBioBank, cover recovery and transport costs, so there is no additional cost to the family beyond usual funeral expenses. But costs and arrangements can vary by program. The Alzheimer’s Association notes that a brain autopsy may involve cost and special arrangements, so families should ask in advance what is covered, who handles transport and recovery, and whether any out-of-pocket expenses could arise.

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Brains are used for much more than Alzheimer’s research

Donated brain tissue supports research across many conditions, including:

Depression, anxiety, bipolar disorder, schizophrenia

Multiple sclerosis, epilepsy

Addiction

Traumatic brain injury (TBI) & CTE

Autism spectrum disorder

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How federal funding affects brain donation & research centers

Being Patient reports that the United States has 35 Alzheimer’s Disease Research Centers, and that as of May 2025, 13 of those 35 centers no longer had federal funding. These centers often depend on NIH grants of about $3 million per year, typically awarded for five to 10 years, to support core operations such as staffing, research, caregiver education, and brain sample storage. When grant renewals are delayed or funding disappears altogether, centers can be left scrambling to sustain even basic functions. That disruption raises broader concerns about the continuity of Alzheimer’s research, including the ability to preserve brain bank activities and maintain the infrastructure that makes long-term scientific study possible.

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Learn more

Explore more resources on beingpatient.com:

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Want to learn more?

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• After death, brain bank staff coordinate with the hospital or care facility, funeral director, and next of kin.
• The body is transported to a mortuary, where a brain-only autopsy is performed.
• The brain and spinal cord are removed and quickly transported to the brain bank.

Researchers use brain tissue to:

• Identify disease patterns and biomarkers at the microscopic level, supporting the development of earlier diagnostics and better treatments
• Build larger collections of brain tissue that include information about a person’s symptoms and medical history so researchers can study a range of neurodegenerative diseases

• At the bank, one half of the brain is preserved in fixative and the other half is frozen for future research.
• Speed matters: the shorter the time between death and preservation, the better the tissue quality.
• A neuropathologist examines the tissue for disease-related proteins and can make a formal diagnosis.
• Approved researchers may then use the tissue to study Alzheimer’s, Parkinson’s, CTE, and other brain diseases.

Brain donation starts with advance arrangements through a brain bank or donation program.