Equitable formal care access: examining processes for Hispanic/Latino family dementia caregivers' decision-making

Although there are benefits to formal care, Hispanic/Latino family caregivers of people with dementia face multiple barriers to access. Moreover, the decision-making processes Hispanic/Latino family caregivers use when considering formal care are unclear. The present study examines how Hispanic/Latino family caregivers make formal care decisions, explores why they choose to use or avoid formal care, and identifies accessible methods of disseminating information about formal care options.

We conducted virtual interviews with 14 Hispanic/Latino caregivers of people with dementia in the United States. These interviews were guided by the Ottawa Decision Support Framework, conducted in English and Spanish, and analyzed deductively using thematic analysis.

Four main themes were identified: (1) reasons family caregivers may not choose formal care, (2) perceived benefits of formal care, (3) how family caregivers choose formal care, and (4) recommendations for delivering information about formal care options. Although Hispanic/Latino family caregivers recognize formal care provides respite and support, many prefer to use it when their caregiving responsibilities become overwhelming. Researchers also found that participants' ability to embrace Hispanic/Latino culture and Spanish proficiency were crucial. Participants expressed the importance of guidance from doctors and the efficiency of online methods in disseminating information.

This study provides a foundation for addressing ethnic disparities in access to formal care. It also lays crucial groundwork for the future development of decision-support interventions by examining decisional needs, identifying accessible methods for disseminating information, and centering the Hispanic/Latino experience.