Network Analysis of Family Caregiving for People Living with Dementia: A Survey of Caregiver Networks in Clinical and Community Settings

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Project Summary Older adults with Alzheimer’s disease rely on family caregivers for the majority of their care. These caregivers are a crucial first line of defense for management of cognitive health problems, but caregivers often report being overwhelmed and underprepared for their role. Research and interventions targeting caregivers often limit their focus to one primary caregiver, typically a spouse or child, but most caregivers enlist secondary caregivers for additional support including family, friends, and health professionals. Ongoing changes in family structure, including an increase in adults aging without spouses or children, raise questions about who will step into a caregiving role for many aging Americans. Considering these trends, little is known about the prevalence, roles, or health-related consequences of secondary caregivers. In this R21 proposal we describe an exploratory study of the caregiver networks of a sample of older adults living with Alzheimer’s disease and related dementias (ADRD), including informal and professional caregivers outside of the primary caregiving dyad. Our objective is to apply insights from social network analysis (SNA) to improve understanding of the real-world caregiver networks that older adults coping with memory disorders rely on day-to-day. Aim 1. Identify consequences of family structure for caregiver network participation and composition. We will examine how dementia caregiving tasks are shared among kin, non-kin, and professionals, and how caregiver networks vary across diverse social and medical contexts. Aim 2. Analyze associations between caregiver network characteristics and caregiving outcomes. Outcomes include the quality and costs of care, use of formal services, and primary caregiver burden and mental health. Developing our understanding of the family caregiver networks providing support to people living with ADRD has advantages for healthcare providers, policymakers, and researchers. First, improved characterization of caregiver networks will support identification of at-risk individuals who lack needed support. Our approach may also help to identify novel intervention targets outside of the primary caregiving dyad. Second, overlooking the labor of secondary caregivers may have led policymakers to overestimate the ability of family members to absorb the growing national burden of care for Alzheimer’s disease. Precise estimates of the dementia workforce are essential for evaluating the costs of healthcare policy options in an aging nation. Third, we hope to develop a network science model for caregiving that can be adapted to other illness and treatment contexts.