Entry into the caregiving role is similarly variable. In populations in which care recipients experience short-term or episodic periods of disability, such as early-stage cancer and heart failure, the caregiving role may be short term but intense or it may wax and wane over time. In populations in which the care recipients become increasingly impaired over time, such as with increasing frailty, dementia, Parkinson's disease, or advanced cancer, the caregiving role expands accordingly. Caregiving trajectories include transitions in both the care needs of the older adult and in the settings in which care is provided ( Gitlin and Wolff, 2012). The committee conceptualized caregiving over time as “caregiving trajectories” to highlight the dynamic nature of the role and the different directions it can take. The diversity of families, the timing of entry into the caregiving role, the duration of the role in relation to the overall life course of the caregiver, and transitions in care experienced over time all shape the nature of the caregiving role.
See Chapter 2 and Appendix E for further information about the surveys and the committee's analyses of the publicly available survey datasets.ĭespite many common experiences, caregivers' roles are highly variable across the course of caregiving. “High-need” refers to family caregivers of individuals who have probable dementia or who need help with at least two self-care activities (i.e., bathing, dressing, eating, toileting, or getting in and out of bed).
The committee distinguished between two subgroups of NSOC family caregivers: those who help an older adult because of health or functioning reasons and those caregivers who help “high-need” older adults. Family caregivers of nursing home residents are not included in NSOC. It also draws from the National Health and Aging Trends Study (NHATS) and its companion the National Study of Caregiving (NSOC), two linked federally funded surveys designed to document how functioning changes with age, the role of the family caregivers identified by the NHATS respondents who live independently or in a senior community, assisted living facility, or other residential setting ( Kasper et al., 2014).
The chapter reviews an extensive literature on family caregiving of older adults. It describes the trajectory and dynamic nature of caregiving over time, the increasing complexity and scope of caregiver responsibilities including the issues involved in family caregivers' role as surrogate decision makers, and the evidence on the impact of caregiving on the health and well-being of caregivers of older adults. This chapter examines the multiple and evolving roles of family caregivers of older adults and the impact of assuming these roles on caregivers' health and well-being. As a society, we have always depended on families to provide emotional support, and to assist their older parents, grandparents, and other family members when they can no longer function independently.
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