Challenges in Donating a Brain for Research

<figure> <img alt="An illustration of a small man looking up at a giant coral-colored brain with branches leading to various symbols including a hand in a blocking position, a question mark, and an X." src="https://platform.vox.com/wp-content/uploads/sites/2/2026/08/ClareOwen_BrainDonation.jpg?quality=90&amp;strip=all&amp;crop=0,0,100,100" /> <figcaption> </figcaption> </figure> <p class="wp-block-paragraph">A family member is attempting to navigate the process of donating their 78-year-old father's brain, who has advanced dementia and resides in a memory care community. The family is in contact with James Watkins, the research and study coordinator of the <a href="https://eastonad.ucla.edu/research-clinical-trials/brain-donation-program">UCLA brain donation program</a>, and Rachel from a crematorium, which has limitations in facilitating the donation.</p> <p class="wp-block-paragraph">The World Health Organization identifies dementia as a major health challenge, predicting that 78 million people will be affected by the end of the decade, representing a 188 percent increase since 2000, with an annual global cost exceeding $2.8 trillion. However, research into dementia is hindered by insufficient funding, data quality, and coordination with patients and caregivers.</p> <p class="wp-block-paragraph">The individual has not previously participated in research studies, which is typically how brain donations are arranged. They have faced difficulties in managing the logistics of the donation process while balancing family responsibilities.</p> <p class="wp-block-paragraph">To donate a brain, individuals must coordinate with brain banks, which have historically been competitive. However, in 2013, the National Institutes of Health established the <a href="https://neurobiobank.nih.gov/">NeuroBioBank</a>, a collaborative effort among various brain banks, including institutions like Harvard and UCLA, to share brain tissue for research.</p> <p class="wp-block-paragraph">The Brain Donor Project, founded by Tish Hevel, assists potential donors in registering and connecting with nearby brain banks. The family learned that local institutions would not accept the father's brain due to his lack of prior participation in studies, leading to a prolonged search for options.</p> <p class="wp-block-paragraph">Watkins provided guidance on the necessary steps for brain retrieval, which involves contacting the crematorium immediately after death and ensuring they can accommodate the retrieval process. The logistics can be complex, often requiring coordination with multiple parties.</p> <p class="wp-block-paragraph">Brain tissue analysis is crucial for understanding neurological diseases, as it provides insights that imaging techniques cannot. Dr. Melissa Murray from Mayo Clinic emphasizes the importance of examining brain cells to identify vulnerabilities that could lead to targeted treatments.</p> <p class="wp-block-paragraph">The family hopes to obtain a neuropathology report that could clarify the specific type of dementia their father has, as definitive diagnoses often require post-mortem examination.</p> <p class="wp-block-paragraph">Despite the potential benefits of brain donation, many families face barriers, including exhaustion from caregiving responsibilities and a lack of communication from healthcare providers about donation options. Hevel is working to raise awareness and improve the donation process, but challenges remain in coordinating the necessary logistics.</p> <p class="wp-block-paragraph">After months of preparation, the family had a plan in place for when their father passed. However, when the time came, they encountered a logistical barrier: the crematorium's operational hours did not align with the timing of the father's death, preventing the brain donation from occurring.</p> <p class="wp-block-paragraph">Hevel noted that while the process is challenging, families often find comfort in knowing their loved one's donation contributes to scientific understanding. The complexities of brain donation highlight the need for better systems to support families during difficult times.</p>