TABLE 6-1 Recent Studies Giving Estimates of Caregiving Prevalence and/or Hours


Source Data and Year

Caregiver Definition

Estimated Prevalence and Economic Value of Family Caregiving, by State (2004) (National Family Caregivers Association & Family Caregiver Alliance, 2006).

Estimates for 2004, updated from 1986 Survey of Income and Program Participation (SIPP) and 1987-1988 National Survey of Families and Households (NSFH)

SIPP: Care recipient 15+, with health condition, caregiver 15+, within last month; NSFH: Care recipient 18+, caregiver 18+, with long-term illness or disability, within last month

Many Older Americas Engage in Caregiving Activities (Johnson and Schaner, 2005).

2002 Health and Retirement Study

Care recipient any age, caregiver 55+, within last month (for care of spouse) or last 2 years (for care of parents/in-laws)

A Profile of Frail Older Americans and Their Caregivers (Johnson and Wiener, 2006).

2002 Health and Retirement Study

Care recipient 65+, ADL or IADL dependency, caregiver 18+, within last month

Caregiving: A National Profile and Assessment of Caregiver Services and Needs (McKune et al., 2006).

2000 Behavioral Risk Factor Surveillance System

Care recipient 60+, with long-term illness or disability, caregiver 18+, within last month

Caregiving in the U.S. (National Alliance for Caregiving and AARP, 2004).

Survey designed for the publication, 2003

Care recipient 18+, ADL or IADL dependency, caregiver 18+, within last year


example, spousal caregivers are increasingly older themselves. The proportion of spousal primary caregivers who are aged 75 and above increased from 38 percent in 1989 to 47 percent in 1999 (Wolff and Kasper, 2006). Given the increasing ages of care recipients and their spouses, children are fulfilling the role of primary caregiver more and more often (Spillman and Black, 2005; Wolff and Kasper, 2006). This trend may at least partly explain why the data show declines in secondary caregiving, as adult children who previously filled in as secondary caregivers now find themselves assuming principal responsibility. Spillman found that the declines in aggregate numbers of informal caregivers between 1984 and 1994 were largely attributed to a drop from 1.7 million to 1.1 million individuals serving as secondary caregivers, with no evidence to suggest fewer primary caregivers

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