Measuring Caregiver Networks of Older Adults with Alzheimer's Disease

The overall goal of this proposal is to use a social network measurement methodology (Network Canvas) to capture expanded definitions of family caregivers related to people living with Alzheimer’s disease and related dementias (AD/ADRD), with special focus on positive/negative relationship aspects. This proposed methodology will advance PWD-caregiver dyad research to encompass measuring real-world PWD-caregiver networks. Among people living with Alzheimer’s disease (PWD), there is a significant population heterogeneity in how individuals define “family” caregivers. Most studies concentrate on the caregiver-PWD dyad with one singular primary caregiver. This dyad approach may not be represent real-life, since multiple family members and friends support the care of PWD. Multiple caregivers may also have differing ideas of obligation, expectations of care, and positive/negative aspects of care. Our prior research has shown that interactions between caregivers can be positive (e.g., teamwork to convince PWD to accept help) or negative (e.g., conflicts causing emotional distress). There is a lack of research on how these interpersonal interactions can be measured on a network level. To mitigate these relationship measurement gaps, our team has built a free, open-source, NIH funded software suite for researchers called Network Canvas, that identifies and maps social network data. We aim to: Aim 1. Measure and map the social network of caregivers of PWD using the Network Canvass methodology, to examine the population heterogeneity in how individuals define “family” caregivers. Aim 2. Measure network predictors of positive wellbeing for caregivers and PWD. We will conduct a large multi-site (IL, IN, HI) study of 200 PWD caregiver networks (up to 1000 people) - using snowball recruitment to identify/interview members of the networks – and the Network Canvas methodology. Recruitment will be through interdisciplinary community partners, physician offices, and ongoing NIH- funded cohorts - representing rural/urban, ethnic/racially diverse, LGBTQ groups. We anticipate multiple tiers of PWD-Caregiver networks: 1.) consentable PWD (mild, moderate AD) with caregivers, 2.) Caregivers only (PWD with severe dementia/unable to consent), 3.) consentable PWD only, no caregivers (un-befriended). Mixed method interviews will examine detailed patient-centered outcome measures, interpersonal interactions (positive/negative), and effects of the networks on the individual. Through this research, we plan to have a 1.) Better understanding of how to measure caregiver networks, 2.) Identify which aspects of caregiver networks are most predictive of the impact on psychological and physical well-being of caregivers and PWD, and 3.) Operationalize a network measurement approach to understand caregiver systems that will be shareable with other researchers to provide larger benefit for the caregiver-PWD research community.