Brain Donation Resources for ADCs
We have created this list of FAQs to help support your ADC's communication efforts about brain donation. This is a template—you can pick and choose which questions you want to use, based on your Center's policies and participant demographics. Please note that the answers to some questions are customizable based on your Center.
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 [name of ADC] 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?
[Use whichever applies to your ADC]
[Name of ADC] will pay for all expenses involved with the brain donation and autopsy, including transportation to and from the donation site.
[Name of ADC] will cover expenses involved with the brain donation and autopsy. However, there may be fees for transportation to and from 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 [name of ADC].
- Step 2: Sign a Consent Form.
- Step 3: Designate a family member or other representative to contact [name of ADC] at the time of death. It is important that the center is contacted immediately, ideally within two hours of death.
- Step 4: [Name of ADC] 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 [name of ADC] 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.
[Insert contact information for your ADC's Brain Donation Program Coordinator here]
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.
Add testimonials from your community
Personal testimonials from brain donation participants who reflect the community you are reaching can be very helpful and persuasive.
Example from Johns Hopkins Memory and Aging Study:
In 2003, after being diagnosed with Alzheimer's, my husband, Arne, enrolled in the Brain Donation Program at Johns Hopkins. He wanted to play an integral part in medicine for future generations. We had no idea at the time how important this would be to our family.
When Arne died, by conducting a brain autopsy, doctors were able to provide a definitive diagnosis. Meeting with the doctor to hear the results provided important information that gave my family and me closure and peace.
Arne's participation will help improve the care of patients with dementia and, someday, find a cure for Alzheimer's.
Give donors reminder tools
Use reminder tools, such as donor cards or refrigerator magnets, to give specific instructions and help family members know exactly what to do (who to call, etc.) at the time of the donor's death.
Tips on Communicating About Brain Donation (PDF, 161K)
Talking to potential donors about brain donation is never easy. Use these tips, based on expert experience and practice, to help ease the way forward. These tips are broken out by conversation style and audience demographic to best fit the needs of your organization and donors. They can be used along with the Brain Donation FAQs.
- Start the conversation early. The decision to donate one’s brain can be difficult. It often requires more than one conversation. Don’t wait for a medical emergency or until it’s too late.
- Include loved ones. The opinions of family and friends can play a critical role in a person’s decision to donate. Invite everyone to participate in the conversation. If loved ones seem reluctant about brain donation, try to have a separate conversation with them without the potential donor present. Provide potential donors with information about how to start the conversation at home.
- Set aside time to talk. Don’t wait until the end of a lengthy annual visit to talk about brain donation. Make the conversation a priority; schedule specific time to talk about it during an appointment.
- Touch base regularly. At each appointment, ask potential donors how they feel about brain donation. Ask them to identify as ready to enroll; open to but still thinking about donation; or not open to donation, now or ever. Let their response guide your conversation.
- Emphasize the benefits. Among brain donors, the most common reason cited for agreeing to donate is to help researchers find a cure for Alzheimer’s disease and related dementias. Make the benefits of brain donation a central part of your conversation.
- Be specific. Offer the potential donor a clear, detailed description of the donation process. This includes brain autopsy and donation procedures, as well as specific information researchers can learn from donated tissue. Regularly share any new research findings and potential implications with possible donors.
- Make every staff member a resource. Ensure that all potential donors receive accurate, detailed information. Hold regular staff meetings and training to help staff become well-versed in brain donation procedures, including autopsy and tissue-processing procedures. Make participation mandatory.
- Involve the principal investigator. Involving the principal investigator in early conversations with potential donors may promote trust and encourage participation.
- Showcase your facility. Offer tours of your brain bank. It’s an opportunity to show potential donors what will happen after their brain is donated and how carefully and respectfully scientists treat donated tissue.
Communicating with Diverse Communities
- Encourage group discussion. Group discussions can be a constructive format. They encourage peer-to-peer interaction, offer people a chance to hear a variety of perspectives, and allow people to communicate in a familiar, comfortable way. For example, some studies suggest African Americans listen to and trust their peers more than hospital and medical staff. Offer facilitated group discussions among cultural subgroups.
- Appeal to your audience. Many people want to know how brain donation will positively affect their community. Emphasize that involvement of diverse communities in research and clinical trials can help scientists discover why some populations are disproportionately affected by Alzheimer’s disease and related dementias. For example, you might explain that although African Americans and Hispanic Americans are more likely to develop Alzheimer’s, our knowledge about why this happens is limited because relatively few people from these groups participate in research.
- Build relationships first. Volunteer at community events, such as health fairs, on a regular basis. This involvement can build the personal connections and trust needed when asking someone to consider brain donation. Maintain these connections throughout the year with regular phone calls, newsletters, and cards for special occasions like birthdays and holidays.
- Meet your audience where they are. If possible, conduct annual evaluations in donors’ homes. Getting to and from your center may be a major barrier to participating in the brain donation program.
- Communicate using a variety of methods. To maximize your reach and impact, present information in multiple ways. For example, potential donors with low literacy levels might not benefit from a written brochure. Use videos, infographics, and easy-to-read materials.
- Involve religious leaders from the community. People from different cultural and religious groups may be concerned about the religious implications of brain donation. Discuss brain donation with religious leaders and other prominent people in the community. Ask them to consider being part of your brain donation education program.
- Promote cultural competency among staff. Provide and require staff to take regular cultural competency training. An ethnically diverse staff may encourage open, honest communication with donors.
Barnes LL, Shah RC, Aggarwal NT, Bennett DA, Schneider JA. The Minority Aging Research Study: Ongoing efforts to obtain brain donation in African Americans without dementia. Current Alzheimer’s Research 2012;9(6):734-745.
Boise L, Hinton L, Rosen HJ, Ruhl M. Will my soul go to heaven if they take my brain? Beliefs and worries about brain donation among four ethnic groups. Gerontologist 2016 March 2 [Epub ahead of print].
Jefferson AL, Lambe S, Cook E, Pimontel M, Palmisano J, Chaisson C. Factors associated with African-American and white elders’ participation in a brain donation program. Alzheimer’s Disease & Associated Disorders 2011;25(1):11-16.
Jefferson AL, Lambe S, Romano RR, Liu D, Islam F, Kowall N. An intervention to enhance Alzheimer’s disease clinical research participation among older African Americans. Journal of Alzheimer’s Disease 2013;36(3):597-606.
Lambe S, Cantwell N, Islam F, Horvath K, Jefferson, AL. Perceptions, knowledge, incentives, and barriers of brain donation among African American elders enrolled in an Alzheimer’s research program. Gerontologist 2011;51(1):28-38.