UC Davis Alzheimer’s Disease Research Center Brain Donation Program
What is the purpose of the Brain Donation Program?
The purpose of the brain donation program is to help us understand and develop preventative therapies and possibly cure Alzheimer’s disease and related dementias for future generations. The research participant’s annual cognitive assessment data and brain donation combine to help us with our research. Teach clinicians about the progression of the disease and provide families with a definitive diagnosis of their brain morbidities.
Why is donating brain tissue important?
Donating brain tissue will contribute to finding better treatment options for Alzheimer’s disease and related dementias. Each brain gives enough tissue to run hundreds of research studies. Brain donation allows potential donors and their loved ones to provide a gift of hope to future generations for anyone who has or may develop Alzheimer’s disease or related dementias.
Alzheimer’s disease progresses differently in each person, so it is significant to receive brain tissue from individuals across different ethnicities. For example, the disease affects African Americans and Latinos at a higher rate than Caucasians. Participation for brain autopsy is lower among African Americans and Latinos as they are still underrepresented in research. Receiving brain tissue from underserved populations will help researchers identify unique factors that are associated with Alzheimer’s and related dementias.
Who can participate in the program?
Participants are enrolled through the UC Davis Alzheimer’s Disease Research Center’s longitudinal research program.
How can I become a participant in the program?
Participation in the Alzheimer’s Disease Research Center’s longitudinal research program entails an annual diagnostic evaluation, cognitive assessment, brain imaging, and other measurement tools. The collection of this data combined with the brain donation enables researchers to learn more about the progression of the disease and develop new prevention and treatment therapies. Please contact either the UC Davis Alzheimer’s Disease Research Center in Sacramento at 916-734-5496 or Walnut Creek at 925-357-6515 to learn more.
How is the brain donation process performed?
- Step 1: Participants are enrolled in the brain donation program.
- Step 2: Participants or a family member will need to sign a consent form for the brain autopsy.
- Step 3: At the time of the donor’s death, a family member or hospice coordinator should call 510-519-7662 to report the death if in the Bay Area. For donors in the Greater Sacramento Metropolitan Area and Northern California, please call 916-778-6120 to report death. These numbers are staffed seven days a week, 24 hours a day.
- Step 4: A driver will be dispatched to pick up the body and transport it to the facility where the brain will be removed and processed.
- Step 5: After the brain is removed, the body will be transported to the location designated by the donor’s representatives.
- Step 6: The brain tissue along with other medical data and measurements will be used in determining the final diagnosis. Occasionally, additional analysis with external experts may be required for diagnosis which may cause a delay.
- Step 7: The donor’s family will receive a pathology report and letter from the Neurologist explaining the diagnosis.
For patients residing out of state, individual arrangements with qualified professionals are made.
Are there any costs associated with the program?
There is no cost for donating your brain for the autopsy. The UC Davis Alzheimer’s Disease Research Center covers these expenses including transportation through research grants.
Who can give consent for brain donation?
The participant can provide consent to donate their brain for research. If the participant is unable to do so themselves, consent can be given by the next of kin.
Will brain donation affect funeral arrangements?
The procedure does not cause a delay in funeral plans and it does not interfere with traditional or religious arrangements such as an open casket funeral. The brain autopsy is performed carefully and will not leave any visible, physical alterations on the body. We encourage families to discuss with their funeral director about making prearrangements for the funeral.
Can I still donate my brain even if I do not have any memory impairment?
Absolutely. It is significant to study the brains of individuals who do not have cognitive impairment. Cognitively healthy brains are equally important to research because it will help us determine which processes and changes in the brain are associated with normal aging and which changes are specifically associated with Alzheimer’s disease and related dementias.
Will my decision to donate be compatible with my religion?
While many religious beliefs may influence attitudes toward brain donation, most religions allow and support brain tissue donation. It is also important to discuss the decision with your family.
We encourage patients to consult with their spiritual advisor if they need additional guidance in their decision to donate or have any questions.
Who should I inform about my decision to donate?
It is important to inform your family of your decision to participate in the brain donation program and plans for your end-of-life decision. Discussion with your loved ones about your decision is an important part of the process because it ensures that they can fulfill and honor your final wishes. We strongly encourage you to provide them information about the donation process, so they know what to do when the time comes.
What if I no longer wish to participate in the brain donation program?
Can I participate in both the UC Davis Whole Body Program and the UC Davis Alzheimer’s Center Brain Donation Program?
Yes, you can. Please advise us if you are enrolled in the UC Davis Whole Body Program.