Understanding how social context shapes decisions to seek institutional care: a qualitative study of experiences of progressive cognitive decline among Latinx families

Abstract

Background and Objectives: Latinx individuals in the United States experience elevated risk of cognitive impairment, less access to institutional care, and more caregiver strain. Cultural orientations have been emphasized as a factor in caregiving decisions in Latinx families but rarely in the context of community structural position and institutional circumstances. This ethnographic case study illustrates how cultural, institutional, and structural factors shape Latinx families’ deliberations and decisions about institutional care for members experiencing cognitive decline. Research Design and Methods: We use comparative ethnography to examine experiences of older adults with cognitive decline and their care partners. Analysis focuses on ten care partners and nine older adults in urban and rural Northern California. Drawing on analytical memos that integrate data from semi-structured interviews and participant observation in community settings, we explore how older adults and care partners make decisions to pursue institutional care. Results: Among our Latinx respondents, decisions to relocate from private to institutional care is complex and context-dependent. These decisions reflect cultural orientations including values of familism and individuality as well as access to resources that reflect structural circumstances and support networks that assist in navigating local institutions. Familism is enacted in diverse ways, with family involvement playing a role before, during, and beyond institutionalization. Discussion and Implications: This study illustrates how social factors contextualize culturally mediated decisions regarding older adult caregiving in Latinx families. Its results imply that navigational assistance could support decision-making in Latinx communities. It highlights the utility of fine-grained data for accurately capturing this dynamic process.