Brenda C. Spillman and Sharon K. Long
January 26, 2007
This report was prepared under contract #HHS-100-03-0011 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 this subject, you can visit the DALTCP home page at http://aspe.hhs.gov/_/office_specific/daltcp.cfm or contact the ASPE Project Officer, Pamela Doty, at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, D.C. 20201. Her e-mail address is: Pamela.Doty@hhs.gov.
The opinions and views expressed in this report are those of the authors. They do not necessarily reflect the views of the Department of Health and Human Services, the contractor or any other funding organization.
Understanding the role of informal caregiving in preventing or delaying nursing home entry is increasingly important for policy. The continued aging of the population and other demographic shifts are likely to reduce the supply of informal caregivers and increase the caregiving burden for a smaller number of caregivers per elder with disability in the next several decades. The success of state and federal policies to prevent or defer admission to nursing facilities or help nursing facility residents return to the community will depend in part on the willingness and ability of informal caregivers to maintain disabled elders in their homes.
In this study, we consider the role of caregiver stress in nursing home placement among a nationally representative sample of community residing elders with chronic disability and their primary informal caregivers. Our data include detailed information on the care recipient, information from caregivers about their caregiving experiences and administrative data that allows us to observe both nursing home entry and duration of nursing home use.
We begin with a descriptive profile of caregivers who report that they experience high stress from caregiving and those reporting lower levels of stress. We then use multivariate models to examine the link between caregiver stress and the likelihood of long-term admission to a nursing home. We address the following questions:
- Does a high level of primary caregiver stress predict nursing home entry?
- What factors are associated with high levels of caregiver stress?
We also simulate the potential impacts of reducing overall caregiver stress and specific factors associated with caregiver stress on nursing home entry.
We model nursing home entry over follow-up periods of up to two years as a function of baseline informal care, paid formal care, and caregiver stress. Because the levels of informal and formal care are jointly decided, and these levels of care affect and are affected by caregiver stress, these three factors are endogenous to the nursing home decision. Failing to account for endogeneity could bias estimates of the role of caregiver stress in nursing home entry. To address endogeneity, we use a two-stage instrumental variables (IV) model in which the first stage equations predict informal care, formal care, and caregiver stress. The predicted values from these first stage regressions then are substituted into the main equation for nursing home entry. To further explore the sources of caregiver stress, we also estimate a probit model including a larger number of potential stress factors.
Our data are from the 1999 National Long Term Care Survey (NLTCS) and its Informal Care Supplement (ICS). The NLTCS is a nationally representative survey of the Medicare elderly that collects detailed information on the health, disability, long-term care, and living situation of the older population. The 1999 ICS interviews the primary informal caregiver of chronically disabled respondents who receive informal help with disability. ICS respondents provide information about a range of caregiving issues and experiences, the amount and types of care provided, basic demographic information, and their living arrangements and family.
Our NLTCS file is augmented by Medicare administrative data and other external files. Minimum Data Set assessments provide all nursing home admissions between the 1999 interview date and July 2004. Medicare claims allow us to control for recent events such as hospitalizations to better characterize the health of sampled elders. Medicare denominator files allow us to identify recipients who are also eligible for Medicaid as well as Medicare managed care enrollees. Vital Statistics files provide reliable information on whether and when care recipients die. County-level data from the Area Resource File allow us to characterize local nursing home and home health market characteristics, as well as more general health system and area characteristics.
Our sample is approximately 1,000 chronically disabled elders who receive informal help with at least one activity of daily living or instrumental activity of daily living and their primary informal caregivers. Chronic disability is defined as lasting at least 90 days, which excludes persons from our sample who may have a short period of disability prior to death or recovery from their disability.
We measure high stress from caregiving as a caregiver assessment of six of higher on a scale of one to ten. To focus on nursing home admissions that are or may become permanent placements, we define relevant admissions as admissions to episodes lasting at least 60 days with no intervening period of 30 days or longer outside the nursing home.
Our profile of personal and informal care characteristics of caregivers reporting high stress and those reporting lower levels of stress indicates that there are few differences in the personal characteristics of caregivers reporting high and low stress, but large differences in the amount and conditions of their caregiving. Notably, highly stressed caregivers are more likely to report being in fair or poor health and to have experienced a decline in health since becoming a caregiver. Relative to lower stress caregivers, highly stressed caregivers provide larger amounts of care, are far more likely to be caring for elders who require near constant supervision or exhibit behavior problems, to report that caregiving is a physical strain, and to report that caregiving is a financial hardship. They also are more likely to report having used paid help with caregiving, assistive devices, or home modifications and to need help, respite, or financial assistance. Interestingly, highly stressed caregivers are no more likely to be the sole caregiver and are similar to low stress caregivers in the duration of their caregiving, but they are far more likely to report that the level of caregiving has increased.
THE LINK BETWEEN HIGH STRESS AND NURSING HOME ENTRY
Our IV estimates indicate that caregiver stress is an important and highly significant predictor of nursing home entry, and that its impact increases in magnitude with the length of follow-up. Specifically:
Having a highly stressed caregiver at baseline increases the likelihood of nursing home entry within one year by 12 percentage points, rising to about 17 percentage points for the two-year follow-up.
Simulations suggest that if a hypothetical intervention could eliminate high stress, the rate of admission among elders with highly stressed caregivers could be reduced from about 27 percent to about 10 percent over a two-year follow-up.
The reduction among all care recipients would be 3.3 percentage points over two years, which represents 73,914 elders--about a quarter of all nursing home admissions expected within two years.
FACTORS ASSOCIATED WITH HIGH STRESS
Our probit model of caregiver stress indicates that factors associated with the level and intensity of the recipients care needs were important predictors of high caregiver stress, while the caregivers personal characteristics and living situation generally were not. We find that:
Physical strain from caregiving is by far the strongest predictor, raising the likelihood that a caregiver is highly stressed by 22 percentage points.
Other important predictors are frequently having sleep disturbed by caregiving responsibilities or dealing with a recipients problem and financial hardship from caregiving.
Simulations indicate that interventions that reduced both physical strain and financial hardship would reduce high stress from about 19 percent to 8 percent of all caregivers.
Reducing the number of high stress caregivers to 8 percent would reduce nursing home entry by 2 percentage points, or about 42,000 elders by the end of two years--nearly 60 percent of the reduction if high caregiver stress could be eliminated.
DISCUSSION AND CONCLUSIONS
Our analysis provides support for initiatives to reduce caregiver stress among persons caring for chronically disabled elders as a strategy to reduce or defer nursing home entry and perhaps to underpin current efforts to return nursing home residents to community-based alternatives.
Physical strain from caregiving was by far the most important predictor of high levels of stress, but indicators of the disruptive aspects of caregiving--frequently disturbed sleep and recipient problem behaviors--and financial hardship also were important. Strategies for reducing caregiver stress could include greater availability of respite care, caregiver training and more information about and access to devices such as chair and bed lifts that might reduce the physical toll from strenuous tasks, assistance in managing recipient behaviors that are disruptive and increase the physical and emotional strain of caregiving, and/or financial assistance.
Additional research is needed to further explore the paths by which policies to support caregiving could reduce caregiver stress and, by doing so, nursing home entry. Our simulations considered only direct impacts of selected stress factors. It would be useful to replicate the analysis using alternative measures of stress and considering interactions between different sources of stress to better understand the role of caregiver stress in long-term nursing home entry, as well as other outcomes, such as other health care spending.