This study by the Cleveland Alzheimer’s Disease Research Center (CADRC) ran from May 2019 to September 2024 and had 277 people taking part, including healthy folks, those with mild cognitive issues, and people dealing with dementia. The aim? To get a better understanding of brain donation decision-making, which is crucial for advancing research on Alzheimer’s and dementia.

The article published in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association on September 10, 2024, examines factors affecting decision-making about enrollment in brain donation programs over time among CADRC participants. It highlights key demographic, cognitive, and study-related elements that impact whether participants choose to enroll, stay undecided, or change their mind about brain donation. The study finds that:

• 41% enrolled, 9% declined, 50% were undecided at baseline.
• 20% changed their BDP status over time, most commonly from undecided to yes.
• Enrollees were older, more likely to be cognitively impaired, White, partnered, better educated, and had a relative as a study partner.
• Those who changed their BDP status were more likely to be cognitively normal and had more study visits.
• Enrollment and indecision rates varied depending on which staff member obtained consent.