Caregiver Service Use: A Complex Story of Care at the End of Life

ABSTRACT

This study explored the impact of caregiving, service use, and unmet needs of caregivers of the dying and whether end-of-life caregiving differs from other types of caregiving. We hypothesized that end-of-life caregivers would have greater unmet needs before and after the death of their care recipient and that they would report lower levels of well-being than continuing caregivers. We looked specifically at the service use of caregivers whose care recipients died during the study period and whether or not such service use helped caregivers to manage end-of-life care. This study showed that, on average, end-of-life caregivers are older, more likely to be White, and provide care for individuals with greater Instrumental Activities of Daily Living (IADL) and Activities of Daily Living (ADL) needs and severe memory problems. In cross-sectional analyses, end-of-life caregivers experienced greater emotional stress, physical strain, and poorer health and used more supportive services than their caregiving counterparts. However, after controlling for other covariates in regression analyses, end of life care remained a predictor of only physical strain.

KEYWORDS:

• Bereavement
• caregiving
• impact of caregiving
• service use
• unmet needs

This study was supported through a generous grant from the Archstone Foundation and an interagency agreement with the California Department of Aging. The authors thank Andrew Scharlach and Amanda Lehning for their assistance in reviewing this article in preparation for publication.

Notes

∗p < .05; ∗∗p < .01; ∗∗∗p < .001.

∗p < .05; ∗∗p < .01; ∗∗∗p < .001.

^a EOL Caregivers 2002 are compared to Continuing Caregivers 2002.

^b EOL Caregivers 2004 are compared to Continuing Caregivers 2004.

∗p < .05; ∗∗p < .01; ∗∗∗p < .001.

Note. Variables were entered into regression models in the order presented. CG = caregiver; IADL = instrumental activity of daily living; CI = confidence interval.

^a Logistic regression.

^b Variable not include in hypothesized regression model because of relationship with dependent variable.

∗p < .05; ∗∗p < .01; ∗∗∗p < .001.

Additional information

Notes on contributors

Kristen Gustavson

Kristen Gustavson, LCSW, is a Doctoral Candidate in the School of Social Welfare at the University of California—Berkeley in Berkley, California.

Teresa S. Dal Santo

Teresa S. Dal Santo, PhD, is Senior Research Associate in the Center for the Advanced Study of Aging Services, School of Social Welfare at the University of California—Berkeley in Berkley, California.