Caregivers of Frail Elders: Updating a National Profile

TLDR

The study seeks to update national profiles of family caregivers for frail elders to understand how caregiving composition and experience have evolved over time. Using data from the 1989 and 1999 National Long‑Term Care Survey and Informal Caregiver Survey, the authors constructed nationally representative profiles of disabled older adults and their primary informal caregivers at two time points. The analysis reveals a decline in informal caregiving, with more disabled older adults receiving no help, older and more disabled recipients in 1999, primary caregivers mainly children and spouses (children becoming more common and others less so), high caregiving intensity, and an increase in caregivers working alone from 34.9 % to 52.8 %.

Abstract

Purpose:Family caregivers comprise the backbone of long-term-care provision in the United States, yet little is known about how the composition and experience of family caregiving has changed over time. Design and Methods:Data are drawn from the 1989 and 1999 National Long-Term Care Survey and Informal Caregiver Survey to develop nationally representative profiles of disabled older adults and their primary informal caregivers at two points in time. Results:The proportion of chronically disabled community-dwelling older adults who were receiving informal assistance from family or friends declined over the period of interest, whereas the proportion receiving no human help increased. On average, recipients of informal care were older and more disabled in 1999 than in 1989. Primary caregivers were children (41.3%), spouses (38.4%), and other family or friends (20.4%); children were more likely and others less likely to serve as primary caregivers in 1999 relative to 1989. Primary caregivers provided frequent and high levels of help at both points in time. A striking increase was found (from 34.9% to 52.8%) in the proportion of primary caregivers working alone, without secondary caregiver involvement. Implications:In the context of projected demographic trends and budgetary constraints to public health insurance programs, these data underscore the importance of identifying viable strategies to monitor and support family caregivers in the coming years.