Estimating the Prevalence of Informal Caregiving in the US

Informal caregivers are a critical part of the long-term care system in the US. Public health surveillance of informal caregivers in the United States is necessary to promote healthy aging in the community, inform public support systems and research the economic cost of long-term care. This study systematically reviews approaches that national surveys have used to measure informal caregiving to community-dwelling disabled older adults and examines the implications of these different approaches for prevalence estimates of caregiving. Review of six national surveys indicates that published prevalence estimates of caregiving to disabled older adults range from 3.5 million to 33.8 million. Two major methodological sources of the variation in estimates were identified. First, the use of activities of daily living (ADLs) and instrumental activities of daily living (IADLs) to define the disabled older care-recipient yielded reduced prevalence estimates in three surveys compared with surveys which used a less-defined definition of disability. Second, indentifying caregivers through the disabled-care recipient yielding lower prevalence estimates than surveys in which caregivers were asked to self-identify. The identification of a disabled care-recipient and their caregiver are inextricably interwoven, and attention to the measurement of these concepts is needed. Survey designers should consider asking questions about caregiving and disability across the caregiving/care-receiving dyad. In addition, policy makers who use estimates of caregiving from national health surveys may want to consider how the methods for identifying caregivers and disabled care-recipients affect our understanding of how many caregivers are available to provide care and at what cost.