U.S. Department of Health and Human Services
Caregiver Burden and Institutionalization, Hospital Use, and Stability of Care
Baila Miller and Stephanie McFall
University of Illinois at Chicago, College of Associated Health Professions
This report was prepared under contract #HHS-100-01-0025 between HHS's Office of Social Services Policy (now DALTCP) and the University of Illinois. 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 office at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, S.W., Washington, D.C. 20201. The e-mail address is: webmaster.DALTCP@hhs.gov. The Project Officer was Pamela Doty.
This study assessed a variety of longitudinal models to examine the effect of different types of caregiver burden on outcomes important to policy makers: nursing home admissions, hospital use, and stability of the family and formal care network. Burden is defined as the caregiver's appraisal of the balance between level of care demands, level of resources available, and quality of caregiver-care recipient relationship. We distinguished two dimensions of burden: personal burden affecting the caregiver's choice of personal actions and activities, and interpersonal burden affecting the interpersonal relationship between the caregiver and the care-receiver. Nursing home admissions represent the largest and most costly component of long-term care, and hospitalization is the most costly component of health care. Stability of the family care network represents the family response to potential "burnout" by overburdened caregivers. Changes in informal and formal networks of assistance may alleviate burden by shifting or rearranging demands among network participants.
The objectives of the study were: (1) to describe two-year changes in health status, functional abilities, sources of informal care and living arrangements of a subsample of frail elders cared for by their spouses or adult children in 1982; (2) to assess the effect of caregiver burden on nursing home admission, hospital use, and caregiver stability in 1984, controlling for level of elder impairment, socio-economic status, gender, and age. Our assessment contained a number of unique attributes in its use of a national probability survey of caregivers linked to a longitudinal survey of frail elders, containing data from both the caregiver's and frail older person's perspectives and inclusion of a range of long-term care outcomes for an heterogenous group of people who are at high risk for these outcomes. The study also included detailed measurement of a multi-dimensional concept of caregiver burden, to focus on the longitudinal effect of caregiver burden within the context of changing functional limitations.
The data were drawn from the 1982-1984 National Long-Term Care Survey (NLTCS) and the Informal Caregivers Survey (ICS). The NLTCS of frail older persons investigated the demographic characteristics, health and functioning, and patterns of assistance of a national sample of non-institutionalized persons 65 years of age or over. The ICS was conducted in 1983 with a sub-population of informal helpers, 14 years or older, who were identified by a random sample of the NLTCS respondents. The sample analyzed in this study was further restricted to a subset of older persons who had sole spouse and adult child caregivers in 1982, resulting in a 1982 base sample of 940 caregivers that included 351 wives (37 percent), 203 husbands (21.6 percent), 304 daughters (32.3 percent) and 82 sons (8.7 percent) and the frail older persons they assisted. In 1984, 644 older persons from this subsample were still living in the community and form the basis for most of the longitudinal analyses.
We organize our summary of results by general longitudinal effects and results pertaining to burden and other correlates of our major outcome variables. Distinct multivariate models were developed for each outcome.
General Longitudinal Effects
- Two-thirds of the baseline sample were community residents two years later; one-fourth had died, and 7 percent were nursing home residents. Males, non-whites, and those with greater ADL limitations had higher mortality rates.
- Approximately 40 percent were hospitalized in each time period. Of those hospitalized, about 50 percent reported hospitalizations at both time periods.
- Informal task support networks show greater stability in composition and size than change, with a slightly higher degree of change in the level of help provided. Specifically, household size was most stable, followed by slightly more fluctuation in the number of informal helpers, and even more fluctuation in the amount of informal persons days of help.
- Although smaller in scope and use, formal networks had greater instability over the two years, responding more to time-specific needs than the informal care network. There was a general trend to increase use in formal help over time, but over three-fourths of the sample did not use any formal helpers at any time during the study period.
Nursing Home Admissions
- Nursing home admissions were associated with being older, white, more severe ADL and IADL limitations, use of formal helpers, and both types of caregiver burden at the bivariate level.
- Nursing home admissions were predicted by interpersonal burden, use of formal helpers, white race, older age, and higher ADL limitations.
Changes in Care Network
- Socio-demographic characteristics of the caregiver and frail older person were rarely associated with change in network size per se. Personal burden of the caregiver was associated with an increase in days of informal and formal help.
- Increased functional disability during the two year period, and poorer health status of the frail older person in 1984, represented by ADL and IADL disability and cognitive problems were associated with larger networks and higher levels of care in both informal and formal helper networks.
- Those with high levels of personal burden were more likely to report changes in formal helpers in response to changes in informal helpers than those with low levels of personal burden.
- Changes in informal task support networks were predicted by changes in ADL and IADL limitations, but not personal or interpersonal burden.
- Changes in the use of formal services were predicted by personal burden, greater ADL and IADL limitations, prior hospitalization, prior use of formal helpers, fewer informal helpers, older age of the frail person, and higher per-capita income.
- Hospitalization reports in 1984 were associated with previous hospitalization, number of chronic conditions, and having a spouse caregiver. The number of admissions was associated with lack of a regular source of care and chronic conditions.
- The only significant predictors of hospitalization in 1983-1984 were previous hospitalizations in 1982, the number of chronic conditions of the older person, and caregiver relationship. Neither personal nor interpersonal burden had any effect on hospital use by the frail elderly.
Each dimension of burden influenced a different outcome. The primary effect of personal burden, when controlling for other relevant variables, was on the use of formal services. The link between personal burden and use of formal helpers, especially in the context of increased dependency of the frail older person, suggests that the confinement associated with intense care is handled by bringing in other helpers, if services are available. The primary effect of interpersonal burden, when controlling for other variables, was on the risk of nursing home admission. This result suggests that when the cognitive and affective bonds that link family members together are either seriously disturbed or no longer present, a limit to the degree of reciprocity and obligation engendered by past relationship histories may be reached. Breaking the traditional bounds of the obligation for family care through institutionalization may appear the only way to respond to balance generational and individual family needs within the individual family system.
The results of this study support the importance of developing more specific models linking service programs to populations targeted by level and type of burden, as well as level of impairment of the frail person, and characteristics of the helper network. An important next step is to determine which service combinations/options would meet the different types of burden experienced by the caregiver.
|The Full Report is also available from the DALTCP website (http://aspe.hhs.gov/_/office_specific/daltcp.cfm) or directly at http://aspe.hhs.gov/daltcp/reports/burden.htm.|