Associations Between Dementia Caregiver Network Complexity and Primary Caregiver Burden and Mental Health

Abstract Persons living with dementia (PLWD) are often supported by complex networks of interconnected informal and professional caregivers who perform a wide variety of caregiving-related tasks. Many primary caregivers are older adults themselves who have been thrown into a complicated and demanding care manager role with little training or support. We examine whether larger, more complex caregiver networks, including increased professional involvement, are a supporting resource or additional burden for primary caregivers at their center. We report results from a quantitative Social Network Analysis (SNA) study of 250 PLWD in the United States. SNA is a valuable tool for measuring complex networks without relying on reductive social interaction scales. We measured caregiver networks using SNA name generators to identify any contributors to ten caregiving-related tasks. Statistical analyses identified associations between caregiver network characteristics (size, composition, stability, supportiveness, and coordination) and primary caregiver well-being (PHQ-4 depression, PSS-4 stress, loneliness, and ZBI-4 burden). The sample included 131 primary caregivers age 60+ who were embedded in large networks of 9.1 secondary caregivers, on average (SD = 5.0, range=0-28). Larger caregiver networks were associated with higher primary caregiver stress (r=.25; p<.01) and burden (r=.26; p<.01). When primary caregivers had more frequent disagreements with others, they reported higher stress (r=.20; p<.05), loneliness (r=.18; p<.05), and burden (r=.29; p<.001). Professional composition and network stability were not associated with primary caregiver well-being, although more coordination was associated with perceived support and self-affirmation. Whereas others have highlighted the beneficial aspects of caregiver networks, we identify challenges in more complex caregiver systems.