To donate, or not to donate, that is the question: Latino insights into brain donation

Abstract

Introduction: Latinos are underrepresented in brain autopsy research on Alzheimer's disease and related dementias (ADRD). The study's purpose is to identify Latinos’ attitudes about brain donation (BD) to inform methods by which researchers can increase autopsy consent. Methods: Forty Latinos (mean age: 59.4 years) completed a semi-structured interview and were presented with educational information about BD. Participants completed a questionnaire assessing their understanding of BD and willingness to donate their brain for research. Results: Among participants, there was near unanimous support for BD to study ADRD after hearing educational information. However, prior to the information presented, participants reported a lack of knowledge about BD and demonstrated a possibility that misunderstandings about BD may affect participation. Discussion: While nearly all study participants agree that donating is beneficial for research and for future generations, the lack of BD information must be addressed to help support positive attitudes and willingness for participation.