UAS-CLEAR: A new nationally representative longitudinal study of caregiving experiences and well-being across the lifecourse

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Project Summary Up to 36 million Americans provide caregiving to disabled adults and approximately 16.1 million provide informal caregiving to people with Alzheimer’s disease and related dementias (ADRD). Given the rising number of older adults with disability and ADRD and the accompanying shortage and cost of paid caregivers, family and other unpaid caregivers are increasingly vital in the long-term care of older adults. Caregiving is often shared across multiple social partners across the life course, across generations within family, extended family, stepfamily and non-family ties who may experience heterogeneous burden. Yet, most research focuses on spouse and child caregivers. Digital technology-enabled studies of daily stress exposure (e.g., interpersonal tensions, work stress) and reactivity (i.e., the link between exposure and daily well-being outcomes) may provide crucial information regarding the mechanisms by which caregiving is linked with greater burden or worse psychological and physical health outcomes. The present study develops and administers new survey instruments in the Understanding America Study (UAS) to identify caregivers and implements new EMA assessments and wearable devices to capture caregivers’ daily experiences and their links with daily emotional and physiological well-being among ADRD and non-ADRD family and non-family caregivers ranging in age from young adulthood to old age. The UAS is a well-established, probability-based Internet panel currently comprising 10,000 individuals ages 18 and older and is expected to grow to 20,000 respondents by 2027. We address three aims: 1) Build a representative, life-course sample of unpaid caregivers to follow longitudinally and collect real-time daily experience and physiological data, called UAS-Caregiving Lifecourse Experiences Assessed in Real-time (UAS-CLEAR). 2) Compare daily experiences (stress exposure, stress reactivity) among ADRD and non-ADRD family and non-family caregivers from young adulthood to old age. 3) Identify individuals who are more or less resilient to daily stress and examine whether resilience factors vary between ADRD and non-ADRD family and non-family caregivers. Family caregivers are essential to the nation’s well-being and economy yet little information exists regarding the daily lives of ADRD and non-ADRD caregivers across the diverse social partners who provide care. Understanding daily experiences and reactivity and the factors that predict greater resilience and vulnerability to stress in a national sample of caregivers will provide unprecedented information regarding potentially modifiable risk and protective factors for improving caregiver health and well-being.