"My backpack is so heavy": Experiences of Latino caregivers of family with early-onset Alzheimer's.

Abstract

While it is well-known that caregiving can have adverse effects on the physical and mental health of informal caregivers and their families, caregivers of those with early-onset Alzheimer's Disease (EOAD) may have distinct needs. Little is written about the experiences of Latino caregivers of family members with EOAD, especially inherited forms. This study's objective was to explore the experiences and needs of Latino caregivers of persons with EOAD. Five focus group discussions (FGDs) were conducted among 27 informal caregivers of Latinos with EOAD who were recruited through an AD clinic in Los Angeles. The stress of caregiving was compounded by other pressures and worries, such as taking care of young children, providing financially for family, caregivers' own co-morbidities, and contemplating their own risk of inheriting EOAD. Resources for monolingual Spanish speakers were scarce. Participants had two primary unmet needs: information and support services. Participants lacked information about how to provide appropriate care, which heightened fears. Difficulty in obtaining a diagnosis from physicians who were uninformed about EOAD was also common. Recommended topics for informational campaigns included how-to videos on caring for a loved one but also topics related to self-care for caregivers. Our results underscore the need to tailor programs for caregivers of family members with EOAD. Educational campaigns could help to dispel myths and misconceptions, reduce stigma associated with EOAD, and encourage more people to seek timely care. Additional psychosocial support, such as support groups, could build solidarity and self-efficacy. Better access to dual-language information and support could encourage early help-seeking but also improve caregivers' quality of life as they manage long-term caregiving responsibilities.