“My Parent’s Body Is Sacred”
Yadira Montoya, Guilherme Moraes Balbim, Crystal M. Glover, David X. Márquez
Abstract
INTRODUCTION: Brain donation is a critical part of advancing research addressing Alzheimer disease and related dementias (ADRD). Studies on ADRD with an option for brain donation are reliant on family members to fulfill the research participant's plan for brain donation. Thus, family members play a pivotal role in increasing brain donation rates, particularly among under-represented groups. METHODS: This study examines knowledge, attitudes, and beliefs about brain donation for research among Latinos. Latino men (N=4) and Latina women (N=11) 18 years of age or older with a parental figure age 65 years and over were invited to participate in a focus group. RESULTS: Data analyses revealed 3 themes. Two themes focused on factors influencing a family's willingness to support brain donation: (a) social and cultural contexts, and (b) lack of knowledge and information about the brain donation process. The last theme provided recommendations for engaging older Latino adults in ADRD research and brain donation. DISCUSSION: Results suggest being inclusive of family members during all stages of the research process, from recruitment to dissemination. In addition, addressing information gaps among Latinos about the process and benefits of brain donation may help mitigate mistrust and misperceptions and increase participation rates in brain donation.