Engagement of Hispanic/Latino Caregivers to Inform Outpatient Dementia Care Approaches

Alzheimer’s Disease and Related Dementias (ADRD) disproportionately affect Americans who identify as Hispanic/Latino and their family caregivers. Existing dementia care approaches may have limited responsiveness to their cultural needs. We partnered with a Hispanic/Latino dementia caregiver advisory board for input on outpatient dementia care approaches, including how to address palliative care needs. Eleven caregiver advisors from two U.S. states participated in six virtual meetings. Meetings were transcribed and researchers used a composite narrative approach to summarize the advisors’ perspectives on outpatient dementia care as lived experience stories. Composite narratives represented their (a) experiences as an informal care coordinator, reflections on their support system, and care planning; (b) unmet needs and barriers to culturally aligned care, and (c) need for reliable care coordination that incorporates cultural values in dementia palliative care approaches. Caregivers emphasized their caregiving struggles and said that even when they had ample support for their loved ones, they lacked emotional support for themselves. Caregivers noted the vital role of culture, faith, family, and language in shaping their experiences. They described needing guidance from trusted clinicians to navigate challenges. They requested linguistically and culturally adapted education on dementia and caregiving. In conclusion, through this community engagement process, we illustrated the importance of outpatient dementia care approaches that are linguistically accessible, culturally relevant, and attentive to input from Hispanic/Latino caregivers to address palliative care needs in the context of dementia.