Comparison of Caregivers of Older Adults in State and National Surveys to Those seeking Help in California's Caregiver Resource Centers.

Abstract

Background and objectives: Large population-based surveys are often used in caregiver research and to support policy, while caregivers seeking help and resources-key targets of the 2022 National Strategy to Support Family Caregivers-have not been fully described. We describe and compare caregiver attributes in a California-wide population seeking support to those in state and national surveys.

Research design and methods: This descriptive comparative study harmonized and compared variables across four data sources (2020-2022): Caregiving in the US (CGUS; n = 1,089); National Study of Caregiving (NSOC; n = 1,885) California Health Interview Survey (CHIS; n = 2,159); and CareNav™, a web-based application supporting services in California-based Caregiver Resource Centers (CRC; n = 5,967).

Results: More CRC caregivers were female, older, married or partnered, and caring for someone with Alzheimer's disease or dementia. They were more likely to provide care for ≥40 hours/week (74% vs. 10% CHIS; 22% CGUS; 16% NSOC); support activities of daily living (94% vs. 68% CGUS), perform medical/nursing tasks (83% vs. 59% CGUS; 10% NSOC) and provide high-intensity care (90% vs. 40% CGUS). More CRC caregivers reported fair/poor health (34% vs. 18% CHIS; 18% CGUS; 21% NSOC), loneliness (21% vs. 2% CHIS), and worse health due to caregiving (31% vs. 15% CHIS; 21% NSOC).

Discussion and implications: Caregivers seeking help and resources provide more full-time, high intensity care with more impact on well-being compared to caregivers in large probabilistic samples. Reliance solely on population-based surveys to set targets to support caregivers, monitor progress, or allocate resources may miss the caregivers that need help the most.