Spousal Caregivers Are Caregiving Alone In The Last Years Of Life

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 55 percent 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.

Keywords: bereavement; caregiving; end-of-life; families; palliative care.

EXHIBIT 1. Percent of spouses of married decedents who required assistance, by caregiving role, sex, and decedent dementia status, 2000–14

SOURCE Authors’ analysis of the Health and Retirement Study core interviews for 2000–14. NOTES Spouses’ caregiving roles were categorized as solo (that is, without additional paid or unpaid support), supported by others, or no caregiving, based on data from the decedent’s final core interview (mean: 11 months before death; range: 0–24). The analysis was based on 1,205 decedents married and living in the community with a spouse who required assistance with one or more self-care or household activities at their final core interview.

EXHIBIT 3. Percent of spouses who provided assistance with self-care and household tasks among solo caregiving spouses of married decedents in the last years of life, by type of assistance and decedent dementia status, 2000–14

SOURCE Authors’ analysis of the Health and Retirement Study core interviews for 2000–14. NOTES The analysis was based on 666 solo caregiving spouses married to a decedent who required assistance with one or more self-care or household activities at their final core interview. Solo caregiving is explained in the notes to exhibit 1. “Money” is managing finances.