"Relationships, Very Quickly, Turn to Nothing": Loneliness, Social Isolation, and Adaptation to Changing Social Lives Among Persons Living With Dementia and Care Partners

Abstract

Background and objectives: Persons with dementia and their care partners have known risks for loneliness and social isolation throughout the disease trajectory, yet little is described about social lives in a population heterogeneous for disease stage, syndrome type, and setting.

Research design and methods: We conducted a secondary analysis of qualitative interviews from multiple studies to triangulate responses from a cohort of persons with dementia (n = 24), and active (n = 33) or bereaved (n = 15) care partners diverse in setting, dementia type and stage, and life experience. Interviews explored challenges related to social lives and were analyzed thematically.

Results: Persons with dementia were on average 80 years old (range: 67-94), 38% female, and 78% diagnosed with Alzheimer's dementia; care partners were on average 67 years old (range: 40-87) and 69% female. We identified 3 primary themes. First, dyads lost external social networks due to complex factors, including discomfort of surrounding social networks, caregiving responsibilities, and progressive cognitive deficits. Second, care partners described disruptions of meaningful dyadic relationships due to progressive cognitive and functional deficits, leading to loneliness and anticipatory grief. Third, adaptive strategies centered on care partners facilitating shared social activities and programs addressing caregiver burden. An overarching theme of disease-course accumulation of barriers to social interactions and constant adaptations was present in all themes.

Discussion and implications: Isolation and loneliness are a shared experience and source of distress for persons with dementia and care partners. Results can inform interventions tailored to individual needs and disease stages of dyads that enhance social connectedness.

Keywords: Caregivers; Cognitive impairment; Social health.

Figure 1.

Study themes in the interactive biopsychosocial model. The Interactive Biopsychosocial Model conceptualizes health and social well-being as produced in intimate, family, or social relationships. Each individual in the dyad is represented by a circle with endowments in three domains of resources, or capital: (1) biophysical (e.g., physical function, sensory function, absence of disease), (2) psychocognitive (emotional and cognitive function), and (3) social (e.g., social ties, social supports, participation in social activities, satisfaction with social relationships). In this model, the combined resources produce the “Social Capital of the Dyad.” Study findings were used to adapt the model to the dyadic experience of dementia. Dementia negatively affects the social capital of the dyad through the loss of shared external social networks and disruptions of the intimate Persons Living with Dementia–Care Partner relationship. Coping strategies involve care partner investment in facilitating social interaction with external networks, shared social activities, or paid/external support services. An overarching theme is change experienced at different stages of dementia, with accumulating or intersecting barriers to social lives, and need for continuous adaptation and creativity.