What is brain donation?
Brain donation is different from other organ donation. As an organ donor, you agree to give your organs to other people to help keep them alive. As a brain donor, your brain will be used for research purposes only—it will not be given to another person. Our scientists use brain tissue donated after death to better understand the causes of and treatment options for Alzheimer's disease and related dementias.
What is a brain autopsy?
Brain autopsy is the process of analyzing a person's brain after death to determine with certainty whether or not the donor had Alzheimer's disease and/or another form of dementia. Currently, only an autopsy can conclusively identify these diseases.
How will researchers learn about Alzheimer's disease and/or other dementias from my brain donation?
Researchers study donated brains to determine the amounts and locations of amyloid plaques and tau tangles—the hallmarks of Alzheimer's. They also look for signs of other types of dementia. This analysis—possible only when brain tissue is studied under a microscope—answers important questions asked by both researchers and the family of the donor.
Families will receive a full report on the type and levels of pathology in their loved one's brain and gain insights into how these brain changes contributed to dementia. Researchers will gain a better understanding of the relationship between clinical test results, fluid and imaging biomarkers, and the brain changes detected in the donated tissue. These insights enable scientists to constantly test new ideas and advance discovery that may one day result in effective therapies.
Why is brain donation important?
Brain donation helps researchers better understand the causes of and treatment options for Alzheimer's disease and related dementias. One donated brain can provide tissue for hundreds of research studies. In this way, it provides a gift of hope to future generations at risk of developing dementia.
Who is eligible for brain donation?
Every participant enrolled at the Wake Forest Alzheimer’s Disease Research Center can donate their brain. This includes participants who have cognitive impairment, as well as those who don't. In fact, both are needed for this important research.
If I don't have memory problems, can I still participate in brain donation?
People without memory or other cognitive problems play a vital role in research on Alzheimer's disease and related dementias. They help us to identify the age-related processes and changes that occur in a cognitively healthy brain. This knowledge helps researchers determine which changes in the brain are specifically related to Alzheimer's disease and/or related dementias and which are normal parts of aging.
Why should I consider donating my brain?
Brain donation provides your loved ones with a definitive diagnosis. This may offer your family closure and help them assess their risk for developing Alzheimer's disease and/or related dementias.
Additionally, it is a gift for future generations. Your donation will increase the chances that better diagnostic tools and treatment options are developed for Alzheimer's disease and related dementias.
What should I consider when making the decision to donate my brain?
The decision to donate your brain can be a difficult one. Start thinking about brain donation early so that you have plenty of time to consider whether it's right for you. Your decision might require more than one conversation with your family and/or doctor. You may want to consider the following:
- Conclusive diagnosis—Currently, Alzheimer's disease and related dementias can only be diagnosed with complete certainty after death. Many families find that a confirmed diagnosis provides closure and resolution.
- Concerns about genetic factors—Alzheimer's disease and related dementias can sometimes run in families. A conclusive diagnosis can help your family members assess their risk.
- Advancing science, offering hope—Your donated brain will help researchers better understand the causes of and treatment options for Alzheimer's disease and related dementias.
Are there any fees to me or my family for brain donation?
The Wake Forest Alzheimer’s Disease Research Center will pay for all expenses involved with the brain donation and autopsy, as well as transportation to the donation site.
Is brain donation compatible with my religion?
Most religious and ethical traditions view organ donation as valuable to society and believe that donating an organ is a personal decision. We encourage you to seek guidance from your spiritual leader if you have questions specific to your faith.
Does brain donation interfere with funeral arrangements?
Brain donation does not affect or delay funeral arrangements. The brain removal is performed carefully and respectfully, and without delay, by an experienced professional and does not interfere with plans for open casket viewing or cremation.
When should I start thinking about brain donation?
It's never too early to start the conversation about brain donation. If you are considering brain donation, talk with your loved ones about it early in your decision-making process. This may reduce their stress at the time of donation.
Whom should I inform about my decision to donate?
It is important to inform those involved with your end-of-life planning and care about your decision to donate your brain. You may want to include relatives, friends, doctors, and other health professionals to help ensure that everyone involved is clear about your wishes. Remember to include brain donation wishes in your end-of-life arrangements, such as in medical advance directives and information for your funeral home.
From start to finish, what is involved in the brain donation process?
- Step 1: Enroll in the brain donation program at the Wake Forest Alzheimer’s Disease Research Center.
- Step 2: Sign a Consent Form.
- Step 3: Designate a family member or other representative to contact the Wake Forest Alzheimer’s Disease Research Center at the time of death. It is important that the Center is contacted immediately, ideally within two hours of death.
- Step 4: The Wake Forest Alzheimer’s Disease Research Center will assist your loved ones in making arrangements for transportation to and from the donation site.
- Step 5: The brain removal is performed.
- Step 6: The brain autopsy is performed. Brain tissue is stored in a carefully controlled Brain Bank.
- Step 7: Your family or other designated recipient is notified with the results of the brain autopsy. This may take up to six months.
- Step 8: Brain tissue is available to qualified scientists across the country for critical research.
When can my loved ones expect the results of the brain autopsy?
Your family or other designated recipient will receive an autopsy report with your conclusive diagnosis. This can take up to six months. Clinicians are available to discuss the results in person or by phone.
What happens to my brain once it's been donated?
An experienced professional will respectfully perform a brain autopsy. They will share the results with your family or other designated recipient. Brain tissue will be stored in a carefully controlled Brain Bank at Wake Forest University for future investigations by scientists.
Researchers look under the microscope for brain changes or biological markers characteristic of Alzheimer's disease and/or other dementias. They then associate these brain changes with your reported symptoms and changes in your performance on various cognitive tests. All of this information will help them gain a better understanding of disease cause, progression, and treatment options.
Will my identity or other personal information be shared?
The identity of each donor is strictly confidential. Your name will not be included in any information sent to researchers. All distributed samples are coded in order to protect your and your family's anonymity and privacy.
What if I change my mind and no longer wish to donate my brain?
You can cancel your donation at any time. Please contact the Brain Donation Program Coordinator as soon as possible should you want to change your decision.
Why is it important for diverse populations to participate in brain donation?
African Americans and Latinos are more likely than Caucasians to have dementia. Yet, African Americans and Latinos are less likely to participate in clinical trials and are underrepresented in research. Including diverse participants in research helps scientists to identify unique factors that may contribute to Alzheimer's disease and/or other dementias in these populations.