The Impact of Latino Values and Cultural Beliefs on Brain Donation: Results of a Pilot Study to Develop Culturally Appropriate Materials and Methods to Increase Rates of Brain Donation in this Under-Studied Patient Group

This article describes the information-gathering process that led to the creation of two educational resources designed specifically for the Hispanic/Latino population, The Precious Gift Brain Donation Brochure and the Brain Donation Steps Handout. In a review of the National Alzheimer’s Coordination Center’s (NACC) database for June 2005–May 2016, the authors found that people who self-identify as Hispanic/Latino made up only 8 percent of participants enrolled and 3 percent of the deceased participants who consented to brain donation.

To create materials that might encourage more participation in dementia research by members of the Hispanic/Latino community, the authors reviewed the literature and resources shared from ADRCs that had been most successful in recruiting participants from that community. Authors also interviewed research recruitment/outreach leadership staff, conducted an online survey in both English and Spanish with local providers and family members, and held focus groups with promotoras (persons in the community who serve as informal health educators).

Bilbrey AC, Humber, BC, Plowey E, et al. The impact of Latino values and cultural beliefs on brain donation: Results of a pilot study to develop culturally appropriate materials and methods to increase rates of brain donation in this under-studied patient group. Clinical Gerontologist 2018;41(3):237–248.