LATINO FAMILY CAREGIVERS’ EXPERIENCES COVERING OUT-OF-POCKET COSTS WHEN CARING FOR SOMEONE LIVING WITH DEMENTIA

Abstract

Abstract Family caregivers to persons living with dementia spend an average of $11,293 annually out-of-pocket on caregiving costs. Costs include home modifications, medications, and other daily expenses. Financial strain from caregiving affects caregiver mental and physical health and is unequally distributed across race/ethnicity groups. While other caregivers spend approximately one-quarter of their income on caregiving, the cost for Latinos family caregivers comprises nearly half of annual income. To gain insight into this disparity, eleven 1-hour in-depth qualitative interviews were conducted with Latino caregivers of persons living with dementia living in California and Texas. Interview transcripts were thematically coded, guided by the Tucker-Seeley Material–Psychosocial–Behavioral Model of financial strain. We identified four themes: 1) caregivers were concerned with meeting the daily needs of care recipients and would incur additional costs, such as credit card interest, to address immediate needs; 2) high levels of psychological distress were expressed regarding caregivers paying for the care of loved ones and themselves in the future; 3) caregivers wanted to use community resources that help older adults and their families but described stressful barriers accessing support. Further, Latino culture affected spending. For example, caregivers incurred shared living costs given reluctance to place loved ones in a nursing facility, exemplifying the concept of familismo. By understanding the factors contributing to high caregiving costs for Latino caregivers and the challenges met when addressing these costs, we can build approaches at both the individual- and policy-levels and develop culturally relevant interventions to help Latino families to lower care costs.