This paper discusses barriers to diagnosis and treatment of Alzheimer's disease (AD) and concomitantly to participation in AD research as elicited from 29 potential Latino participants who ultimately did not enroll in a study evaluating a caregiver intervention. Nearly half of all individuals contacting the researcher about the intervention study failed to meet criteria stipulating an existing AD diagnosis. Barriers to obtaining a diagnosis include lack of knowledge about AD, perceptions of memory loss as normal aging, and structural barriers to accessing care. A quarter of caregivers contacting the researcher felt too overwhelmed to participate.
Many of these barriers have been previously identified as challenges to treatment, suggesting this is not just a methodological research problem but inextricably tied to larger issues of AD knowledge and service accessibility. Engaging Latino communities equitably in the assessment of needs and the process of addressing them, thus ensuring the validity and applicability of the research and findings, is important both for increasing this group's participation in relevant studies and for addressing existing health disparities.
Because of the age of persons diagnosed with younger-onset Alzheimer's disease or other dementias (YOD), an important and as yet relatively little explored area of YOD, particularly in the United States, is the impact on young children of having a parent with YOD. After reviewing the small but growing research in this area, we report on findings from 12 in-depth interviews with children and well-parents in families with a parent with YOD on the experience and needs of children having a parent with this diagnosis. Children report disruption in many aspects of their lives: their developmental trajectory, emotional and psychological development, familial and broader social relationships, and financial stability. Despite these significant disruptions, and a dearth of information, resources, and services tailored to their individual and familial needs, these children demonstrate remarkable resilience and self-awareness. We discuss implications for interventions with these families.
Despite the long-held view that Latinos' value and reliance on family leads to greater involvement of extended family in caring for sick members and reduced perception of burden, some research reports low levels of social support and high levels of distress among Latino caregivers. We explore this seeming discrepancy in a qualitative study of 41 Latino caregivers of family members with Alzheimer's disease, interviewing them regarding the role of familism in their caregiving experience. For some it facilitates caregiving in the traditional, expected manner. Other caregivers disavow its current relevance. Yet others feel a contrast between familism, which they may value in a general, abstract way and more personal, immediate negative feelings they are experiencing from caregiving. We discuss these complex, multidimensional findings, the variation among caregivers, and present implications for practice, policy, and research.
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