Experiences of Latino Family Caregivers in New York City: Implications for Palliative Care.

Abstract

The Latino community is at high risk for developing dementia. Palliative care can support family caregivers of people living with dementia (PLWD). To explore the experiences of New York City (NYC) Latino family caregivers of PLWD and identify implications for palliative care. We conducted qualitative interviews from June to November 2024 with Latino family caregivers of PLWD. Caregivers were recruited from a single NYC health system. We asked open-ended questions exploring caregivers' experiences with dementia, palliative care, and culture. Interviews were recorded, transcribed, and analyzed using thematic analysis with deductive and inductive coding. Nineteen Latino family caregivers participated. Four interviews were conducted in Spanish and caregivers represented five countries of origin. We identified four themes related to palliative care for Latino family caregivers of PLWD. Caregivers Have a Limited Awareness of Palliative Care (Theme 1) was the backdrop of all other themes. Caregiving Is a Labor of Love (Theme 2) describes caregiving challenges, and Caregiving Is an Act of Strength and Resilience (Theme 3) describes how caregivers summarized their sources of support and needs. Integrating Cultural Values into Caregiving (Theme 4) provided a lens to better understand Latino caregivers' unique experiences. Despite describing unmet needs, caregivers were not familiar with palliative care. In the presence of Latino cultural values, caregivers may underestimate all they do and not seek additional support. Palliative care should be introduced as a supportive service to equip families in taking care of their loved ones as they would want.