Collaboration, culture, coordination: Keys to supporting brain donation
Since Dr. Alois Alzheimer first studied the brain of Auguste D., research on brain tissue has been crucial to advancing understanding of Alzheimer’s disease and related dementias (AD/ADRD). Many Americans are aware of the life-saving impact of organ donation, but Alzheimer’s and dementia’s emotional toll on families, combined with cultural and religious values, can make conversations about the research value of brain donation difficult.
Unlike checking the organ donor box when renewing a driver’s license, brain donation requires much more specific advance planning. People who want to donate their brains need to share their wishes with their physician and loved ones, and then register with a brain bank or research center.
Brain donation and sample availability remain low across many groups who are especially important to AD/ADRD research, including non-white populations, people diagnosed with non-Alzheimer’s dementias or familial Alzheimer’s disease, those who have participated in AD/ADRD therapeutics clinical trials, people with Down syndrome, and older adults with no cognitive impairment (healthy controls). Cultural values and historical wrongdoing by the research community (for example, the Tuskegee experiments) present challenges to brain donation for many groups underrepresented in research.
To tackle these challenges, we need data-driven, culturally appropriate educational efforts and intervention strategies. To this end, researchers are trying different ways to spread the word to people from all backgrounds about the value of brain donation to AD/ADRD research. We also want to help families understand that although it is a generous gift to donate a loved one’s brain, the value of the brain donation is increased when people participate in studies while they’re still alive. This enables scientists to better track cognition changes over time and the impact of environmental and biological factors.
For many years, the NIH NeuroBioBank (NBB) has centrally coordinated researchers’ requests for tissue samples, and, through the Brain Donor Project, handles families’ brain donation inquiries. In 2018, NIA joined the NBB to complement the unique strengths of our Alzheimer’s Disease Research Centers (ADRCs) to improve coordination and collaboration with both researchers and families. A 2019 update to the National Plan to Address Alzheimer’s Disease recommended more collaboration between the NBB and ADRCs to help improve access and availability of tissue samples, widen community outreach and engagement, and expand brain donation awareness and acceptance.
NIA’s ADRCs are ramping up culturally tailored outreach events to improve understanding and trust in African American, Latino, Native American, and lower-income Caucasian communities. These sessions combine educational presentations with hands-on activities to better understand AD/ADRD brain biology and research. Attendees can also choose to receive health checks like blood pressure, body mass index, grip strength, cognitive tests, and cheek swabs to learn more about their genetic risk factors.
Audiences at these sessions often come away with new perspectives. After a recent Rush Alzheimer’s Disease Center-led session, a participant emerged understanding how donation can help future generations, saying, “I decided to donate my brain because…it may save somebody’s grandchild.”
NIA and our partners at the NeuroBioBank and ADRCs are excited about these promising efforts. Researchers who want to get involved should check out the following resources:
- Alzheimer's & Dementia Outreach, Recruitment & Engagement Resources on Brain Donation
- Brain Donation Resources for ADRCs
- Brain Donor Project
- National Alzheimer’s Coordinating Center Tissue locator
If you’d like to learn more, you can email me or leave a comment or question below. I’d love to hear your feedback on this important work and get suggestions on how to expand and improve it.