Background/Objectives
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.
Methods
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.
Results
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.
Conclusions
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.
This mixed-methods study examined the health information-seeking behavior of Latino caregivers of people living with dementia. A structured survey and semi-structured interviews were conducted with 21 Latino caregivers in Los Angeles, California. For triangulation, semi-structured interviews were also conducted with six healthcare and social service providers. The interview transcripts were coded and analyzed via thematic analysis, while the survey data were summarized using descriptive statistics. The results show that caregivers sought information on what changes to expect as dementia progresses. Some desired detailed (limited) information to be better prepared (to worry less). The most common action to address their information needs was searching the Internet. However, those who did this tended to be concerned about the quality of information. Overall, this study sheds light on how much detail Latino caregivers desire in the information they need and the actions they take to obtain this information.
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