Family Caregiving in Serious Illness in the United States: Recommendations to Support an Invisible Workforce

Abstract

Family caregivers provide the vast majority of care for individuals with serious illness living in the community but are not often viewed as full members of the healthcare team. Family caregivers are increasingly expected to acquire a sophisticated understanding of the care recipient's condition and new skills to execute complex medical or nursing tasks, often without adequate preparation and support, and with little choice in taking on the role. This review draws on peer-reviewed literature, government reports, and other publications to summarize the challenges faced by family caregivers of older adults in the context of serious illness and to identify opportunities to better integrate them into the healthcare workforce. We discuss promising approaches such as inclusion of family caregivers in consensus-based practice guidelines; the "no wrong door" function, directing consumers to needed resources, regardless of where initial contact is made; and caregiver-friendly workplace policies allowing flexible arrangements. We present specific recommendations focusing on research, clinical practice, and policy changes that promote family-centered care and improve outcomes for caregivers as well as persons with serious illness. J Am Geriatr Soc 67:S451-S456, 2019.

Work and Family in the Second Decade of the 21st Century

“…Although a significant amount of research has addressed the gender divide in kin care, what of race and class? The narrow emphasis on the nuclear family and the omission of extended kin in the study of families and work means that our research and theory obscure the experiences of families of color or those with fewer economic resources who tend to rely more on kin than Whites or those more economically advantaged (Bell, Whitney, & Young, ; Sarkisian & Gerstel, ). There are useful empirical exceptions, however, that we can build on: Using a longitudinal survey, Maume () showed not only that men's kin work increased over time but also that men in blue‐collar occupations provided significantly more hours of care to their elderly relatives than men in white‐collar occupations.…”

“…Macro‐processes shape these micro‐relations: Research emphasizes not only how women's movement into the formal labor force leads to the substitution of paid care for their unpaid care, especially to elderly parents (Folbre, ), but also how hospitals, payers, and Medicaid have moved paid care work out of institutions into homes and families. Only some states allow family members to be paid by Medicaid for their carework (Bell et al, ; Howes, ; Kodate & Timonen, ). Research has looked at the people, often women of color and immigrants, hired to take care of others' kin, and found those hired as caregivers not only typically earn low wages, but often have a difficult time caring for their own families (Clawson & Gerstel, ).…”

“…Demand for unpaid kin care is likely to expand with our aging population, resulting in what Pavalko and Wolfe (, p. 1360) refer to as a “crisis zone” where the demand for care increases while the availability of family to give care declines (Bell et al, ; Freedman & Spillman, ). We know little about how recent changes in various aspects of paid work—whether reduced benefits, increased unpredictability, or nonstandard schedules—shape or are shaped by kin work, although some observational research shows that unpredictability in one family member's work time routinely creates unpredictability in the schedules of other relatives who provide care.…”

Whose Responsibility Is It? Balancing Individual, Family, and Societal Needs for Supporting Seriously Ill Older Adults

“…In their state‐of‐the‐science article on family caregiving in the context of serious illness, Bell and colleagues initiate an important conversation, highlighting the changing caregiving landscape and its implications for families . Based on their review of sociodemographic mix, consequences of caregiving, lived experiences, changing complex roles, as well as clinical practice and workforce preparedness gaps, several key themes emerge that are worthy of further commentary.…”

Introduction to the Special Issue on the Workforce for Seriously Ill Older Adults in the Community

“…This special issue of the Journal of the American Geriatrics Society presents these papers, along with a summary of the recommendation developed at the summit. The articles address a range of pertinent topics: advance care planning and integration of care planning into primary care, clinician communications regarding prognosis and patient preferences, strategies for building a culturally competent workforce, a vision for the palliative care workforce, supporting family caregivers and direct care workers, and linking patients with social services …”