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.

ABSTRACT

OBJECTIVES: Increasing the number of Latino persons with dementia who consent to brain donation (BD) upon death is an important public health goal that has not yet been realized. This study identified the need for culturally sensitive materials to answer questions and support the decision-making process for the family. METHODS: Information about existing rates of BD was obtained from the Alzheimer's Disease Centers. Several methods of data collection (query NACC database, contacting Centers, focus groups, online survey, assessing current protocol and materials) were used to give the needed background to create culturally appropriate BD materials. RESULTS: A decision was made that a brochure for undecided enrollees would be beneficial to discuss BD with family members. For those needing further details, a step-by-step handout would provide additional information. CONCLUSIONS: Through team collaboration and engagement of others in the community who work with Latinos with dementia, we believe this process allowed us to successfully create culturally appropriate informational materials that address a sensitive topic for Hispanic/Latino families. CLINICAL IMPLICATIONS Brain tissue is needed to further knowledge about underlying biological mechanism of neurodegenerative diseases, however it is a sensitive topic. Materials assist with family discussion and facilitate the family's follow-through with BD.