Profiling Psychosocial Dementia Caregiving Networks: The Impact of Dementia Care Networks on Care Outcomes of Medicare Enrollee Persons Living with Dementia
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ABSTRACT Caregivers of persons living with dementia (PLwD) do not act in isolation and are typically involved in broader networks of family and friends who also assist with care, and yet this expanded caregiver network is largely neglected in research. Theories of mutual influence and empirical work suggest that caregivers’ stress and mental health have a negative impact on both caregivers and PLwD, yet recent reports and meta-analyses suggest disappointingly small effects of care-related behavioral interventions. Given that PLwD typically have broad networks involved in care, an exclusive focus on a primary caregiver may be missing the mark. This study aims to fill this immense gap by 1) Classifying dementia caregiver networks into profiles based on compositional and psychosocial facets of the care network, 2) Examining the association between dementia caregiver network profiles on PLwD’s well-being and important healthcare utilization, and 3) Identify the association between changing care needs of PLwD and how dementia caregiver networks change over time. We will first identify a sample of PLwD in the nationally representative National Health and Aging Trends Study (NHATS), which conducts annual interviews with age-eligible Medicare beneficiaries by pooling unique data from the 2011, 2015, and 2017 waves with additional waves forthcoming (2021 and moving forward annually). To characterize care network profiles, we will use information about caregivers from NHATS and additional rich detail from the associated National Study of Caregiving (NSOC), which interviews up to 5 caregivers per eligible NHATS participant. Latent class analysis models will be used to characterize and cluster networks based on similar patterns of compositional and psychosocial characteristics. Measures of between and within- network variability (e.g., average care stress in network, variability of stress within network) will be included. We will then explore the association of care network profiles, and individual components of network profiles, with key health outcomes for PLwD including sleep quality, depression and anxiety symptoms, and important health care utilization (potentially preventable hospitalization, Emergency Department visits, and long-term care stay) through linked NHATS respondent-level Medicare claims. Finally, taking advantage of the longitudinal nature of NHATS and NSOC, we will follow care networks over time to examine the association of network changes with change in PLwD’s self-care needs. This work is significant as results will substantially improve understanding of these caregiver networks and how they may increase risks for negative outcomes for PLwD such that future interventions may target those networks with potential for adverse influence. In line with NIA priorities to improve assessment of caregiving processes and understand connections between family dynamics and patient health and well-being, this understanding of care networks can fundamentally shift the paradigm of caregiving research by establishing the importance of considering family and network systems for research and intervention development, moving beyond the standard focus on a sole, primary caregiver.
