Latino Caregiver Experiences With Dementia Care and Healthcare Navigation

The prevalence of dementia among Latinos in the United States is growing. We explored the experiences of Latino family caregivers of Latino persons living with moderate to advanced dementia (PLWD), drawing on their extensive experience as caregivers navigating the healthcare system to identify opportunities to improve dementia care.

Nineteen Latino caregivers of PLWD who spoke English or Spanish were recruited from outpatient geriatrics clinics and a home-based primary care program in New York City.

We conducted one-on-one semi-structured interviews with family caregivers of PLWD. Interviews were conducted via phone, in-person, or virtual. Interviews were audio recorded, professionally transcribed, translated (if needed), and analyzed using thematic analysis.

We identified two main themes (each with subthemes) that influence Latino dementia caregiver experiences with healthcare: (1) caregiving and understanding of dementia shaped by individual, family, and social factors (subthemes: Caregiver's own understanding of dementia; Lack of support and understanding from family; Latino cultural perspectives on dementia); and (2) navigating formal services amid gaps in cultural alignment and support (subthemes: Trial and error: education and resource gaps; Cultural tension with healthcare).

Culture and family dynamics shape Latino family caregivers' understanding of dementia. Although some had positive experiences, most faced challenges navigating healthcare and experienced gaps in culturally concordant information and support. A culturally centered approach is needed to address these challenges and gaps for the Latino dementia community, including culturally relevant education, resources, and support from the healthcare system and community.