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ABSTRACT To date, knowledge of the experiences of older adults' caregivers at the end of life has come from studies that were limited to specific diseases and so-called primary caregivers and that relied on the recollections of people in convenience samples. Using nationally representative, prospective data for 2011, we found that 900,000 community-dwelling Medicare beneficiaries ages sixty-five and older who died within the following twelve months received support from 2.3 million caregivers. Nearly nine in ten of these caregivers were unpaid. Compared to other caregivers, end-of-life caregivers provided nearly twice as many hours of care per week and, especially in the case of spousal caregivers, reported more care-related challenges. Yet older adults at the end of life were not significantly more likely than other older adults to receive caregiving funded by government, state, or private insurance. To meet the needs of older adults at the end of life, their unpaid caregivers must receive greater recognition and expanded access to supportive services.
Caregivers play a vital role in the care of older adults (those ages sixty-five and older) with disabilities and serious illnesses, including people at the end of life.1,2 Caregivers may assume new and potentially challenging tasks as an older adult's end of life approaches, including managing symptoms, engaging in difficult decisions about transitioning to long-term care or hospice, serving as a surrogate in medical decisions, and hiring paid caregivers.3,4 Furthermore, many older adults experience complex transitions between health care settings at the end of life;3 they could incur multiple hospitalizations or admissions to the intensive care unit;5 or they might receive life-sustaining treatments.6 Service use can lead to high out-of-pocket spending for families7 and fragmented care, both of which further burden older adults and their caregivers.
Existing evidence suggests that caregiving demands at the end of life are significant,8,9 and that certain tasks, such as decision making, are extremely stressful.10 Watching a family member suffering or in pain is difficult.11 Not surprisingly, end-of-life caregivers have been found to experience high levels of depression and anxiety.12 Of particular concern are the consistent findings that these caregivers have high unmet needs themselves and that despite the high level of care they provide, their own use of supportive services (for example, assistance with personal care or...