Overwhelming Odds: Caregiving and the Risk of Institutionalization - Executive Summary


Sandra Newman, Michelle Rice and Raymond Struyk

The Urban Institute

This report was prepared under contract between the U.S. Department of Health and Human Services (HHS), Office of Disability, Aging and Long-Term Care Policy (DALTCP) and the Urban Institute. For additional information about the study, you may visit the DALTCP home page at http://aspe.hhs.gov/daltcp/home.htm or contact the office at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, SW, Washington, DC 20201. The e-mail address is: webmaster.DALTCP@hhs.gov.

This study explores whether informally or formally provided long-term care services reduce the risk of institutionalization among the impaired elderly and the nature of the relationship between support and risk. The study relies principally on the 1982 National Long-Term Care Survey (NLTCS) with supplementary data from the 1984 NLTCS and the National American Housing Survey, which was statistically linked to the NLTCS. The study focuses on the primary caregiver for each of ADL and IADL needs.

Five specific hypotheses are tested. The first is the main effects; that is, that informal or formal support reduces the risk of institutionalization significantly, after other factors that either increase or decrease the individual's vulnerability are taken into account. Neither informal or formal support, measured in terms of assistance with ADL and IADL needs, have independent effects on institutional risk which approach statistical significance.

The second hypothesis is that the availability of informal or formal assistance to the impaired elderly buffers the effects of functional incapacities on the risk of becoming institutionalized; that is, that certain functional incapacities become less likely to lead to institutionalization if support is available. The need for personal assistance with eating was selected for initial testing, and later the need for personal assistance with mobility outside the dwelling. The results do no lend support to the buffering hypothesis either for unpaid assistance or for paid assistance, at least with the simple presence or absence of support measures used in this analysis.

A third hypothesis proposes interaction between formal and informal support; that is, that the informal support system can function because formal support is available. In the absence of formal support, the burdens of caregiving become overwhelming and ultimately lead to institutionalization. Again, tests are negative. The impaired elderly receiving only unpaid care are not significantly more likely to be at risk than those receiving both paid and unpaid assistance.

The fourth area tested was interaction of support with features of the individual's housing unit or neighborhood. Both formal and informal support were tested with six housing and location variables. Two specific hypotheses were tested--that the effects of support on risk will vary depending on the availability of a housing environment that is conducive to serving the long-term care needs of the impaired individual, or that the housing or neighborhood determines whether or not formal or informal care is available, which then results in differing risk of institutionalization.

In no case does the absence of an accommodating environment (measured by space, convenience, special adaptations, or potential flexibility) make informal caregiving a significantly less powerful deterrent of institutionalization. For formal support, those who live in small dwellings are significantly more likely to be at risk of institutionalization than those who have more space. One possible reason for this finding is that space is a proxy for wealth, which is imperfectly reflected in the current income variable in the equations, and those with greater wealth can more easily afford to purchase formal care. None of the other interactions between formal care and housing variables was significant.

The second hypothesis (housing or neighborhood determines formal or informal support) was tested using a path model. Interpretation of such a model is complex, but the results lend little support to the hypothesis.

More comprehensive research into the buffering hypothesis may be useful using controls for the amount and quality of caregiving. It may be possible to test the hypothesis that institutionalization results from the exhaustion of caregiving resources, but such research requires data on the intensity and duration of caregiving.

Finally, the persistent significance of living alone as a predictor of institutionalization risk must be noted. As the availability of support was included as an explicit variable in the models tested, the living arrangement effect cannot be explained in terms of support deficits. At the same time, as measures of support were restricted to primary caregivers, other sources of care that affect the risk of institutionalization and that are highly correlated with living arrangement may have been excluded. This research might be extended by controlling for the potential effects of support beyond that provided by primary caregivers. Other methods for strengthening and extending the research are also suggested.