Convening Hispanic/Latino Caregiving Advisors for Inclusive Research in Dementia Palliative Care.

Abstract

Background: Dementia clinical trials often fail to include diverse and historically minoritized groups. Objective: We sought to adapt the Alzheimer's Disease and Related Dementias-Palliative Care (ADRD-PC) clinical trial to improve enrollment and address the cultural needs of people with late-stage ADRD who identify as Hispanic or Latino and their family caregivers. Design: Bilingual, bicultural research team members adapted study materials and processes using the Cultural Adaptation Process Model. Investigators and research staff held three meetings with eight Hispanic/Latino advisors-seven dementia caregivers and one health care professional. The first two meetings informed linguistic and cultural adaptation of study materials and processes. After piloting the adapted materials with Hispanic/Latino patient-caregiver dyads in the ADRD-PC study, the third meeting focused on refining protocols for recruitment. Results: Key reflections from advisor meetings guided cultural adaptation: lived experiences on dementia caregiving; patient, caregiver, and clinician interactions in the health care system; and limited knowledge and misconceptions of palliative care. Adaptations to the ADRD-PC study materials included specific consideration of preferred language, word choices (i.e., "palliative care" and "caregiver"), and recruitment considerations related to potential barriers to palliative care or research in general. Conclusions: Cultural adaptation of the ADRD-PC dementia palliative care clinical trial protocol depended on participatory methods and collaboration between Hispanic/Latino caregiver advisors and researchers, including bilingual, bicultural team members. Comparable methods may inform future culturally inclusive approaches to clinical research and thus improve representation of minoritized groups in dementia care research.