Abstract
Caregiving in the last years of life is associated with increased depression and negative health outcomes for surviving spouses, many of whom are themselves in poor health. Yet it is unclear how often spouses are caregiving alone, how they differ from supported spouses, and whether lack of support affects postbereavement outcomes. We hypothesized that spouses who were solo caregivers-that is, the only caregivers (paid or unpaid) who provided assistance with a spouse's self-care or household activities-would experience more depression after bereavement than supported spouses would. Using information from the Health and Retirement Study, we found that 55percent of the spouses of community-dwelling married people with disability were solo caregivers. Solo caregiving was even common among people who cared for spouses with dementia and those with adult children living close by. Bereavement outcomes did not differ between solo and supported caregiving spouses. Caregiving spouses are often isolated and may benefit from greater support, particularly during the final years before bereavement. While some state and federal policy proposals aim to systematically recognize and assess caregivers, further innovations in care delivery and reimbursement are needed to adequately support seriously ill older adults and their caregivers. Ultimately, the focus of serious illness care must be expanded from the patient to the family unit.
Highlights
Using information from the Health and Retirement Study, we found that 55 percent of the spouses of community-dwelling married people with disability were solo caregivers
Fifty-five percent of the spouses were serving as solo caregivers, and 36 percent were assisting their spouse with support from others
66 percent were themselves in poor or fair health, 40 percent were activity of daily living (ADL) dependent, and more than half reported having had a hospitalization within two years. (See the appendix for characteristics of spouses who did not provide task-oriented support.)[31]
Summary
Caregiving in the last years of life is associated with increased depression and negative health outcomes for surviving spouses, many of whom are themselves in poor health It is unclear how often spouses are caregiving alone, how they differ from supported spouses, and whether lack of support affects postbereavement outcomes. U npaid caregivers provide highly complex and physically demanding care to their family members throughout the course of illness, including the last years of life.[1] Over 14.7 million unpaid caregivers, mostly family members, assist older adults with daily activities and health care decision making and provide financial and social support.[2] Their care is critical for people with serious illness at the end of life. Families report worsened physical and mental health and more hospitalizations following a loved one’s death when intensive, life-sustaining treatments were performed at the end of life.[11,12,13] On the other hand, comfortfocused treatments including hospice are associated with decreased depression.[11,14,15] bereavement itself is associated with negative consequences for spouses, including increased mortality[16] and reduced personal health maintenance and increased health care expenditures.[17,18]
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