How Does Serious Illness Impact Family Caregivers?

Introduction and Scope of the Problem

Caregivers play a key role in supporting both individuals living with serious illness and those at the end of life. People are living longer with serious illness and multiple chronic illnesses: of every 10 deaths worldwide and in the United States, 7 occur at the end of chronic illness. In the setting of prolonged serious illness, physical and functional abilities often dwindle, and there is increased need for caregivers to provide assistance with activities of daily living. Functional limitations increase with poorer health and advanced age, and it is estimated that more than half of older adults will require assistance with daily activities for at least some point in time, with 13.9% of older adults requiring long-term assistance.

These care needs often increase dramatically as the end of life approaches. Evidence from a nationally representative study of older adults found that while 28% had disability in at least one activity of daily living 2 years before death, nearly 60% had disability in the last month of life. Among Medicare beneficiaries, it has been observed that older adults at the end of life require twice as much care as older adults who are not at the end of life, often necessitating additional assistance of paid caregiving support.

The systems of care that are in place to meet the care needs of those with functional limitations are known as long-term services and supports (LTSS). A growing societal trend toward delivering more illness-related care in the home, driven by both individual and family preferences and reimbursement policies, has led to a growth in community- and home-based LTSS. With the aging of the U.S. population, it is estimated that the number of individuals requiring LTSS is expected to increase to 27 million by the year 2050. Options for LTSS support through Medicaid and other assistance programs such as unemployment and leave benefits may vary greatly based on where someone lives and what additional resources are available. As a result, family caregivers often take on responsibility for complex caregiving and are increasingly being conceptualized as core members of the LTSS team.

In fact, the majority of care provided to those with serious illness and at the end of life is from family caregivers. The Family Caregiver Alliance defines family caregivers as “any relative, partner, friend or neighbor who has a significant relationship with, and provides a broad range of assistance for, an older person or an adult with a chronic or disabling condition.” Family caregivers are also referred to as informal caregivers or unpaid caregivers. For purposes of clarity, this chapter uses the term family caregiver . In 2011, results from a nationally representative sample found nearly 9 in 10 of the 2.3 million caregivers supporting the nearly 1 million older adults at the end of life were family caregivers. As of 2019, it is estimated that 1 in 5, or 53 million, adults in the United States are caregivers, with 6 in 10 caring for an individual with chronic illness or disability.

While it is commonly assumed that family caregivers are able, willing, and available to provide care for seriously ill people at home, this is not always the case. Although societal and cultural norms may influence the acceptance of the caregiving role among family members, demographic shifts in migration across state and national borders, lower rates of childbirth and marriage, and more females in the workforce reduce the availability and accessibility of the family caregiving network. Importantly, many individuals, particularly those with advanced age who outlive their family, may experience “kinlessness” at the end of life; this is a worldwide phenomenon.

While a single primary family caregiver often takes on an outsized role providing caregiving support for an individual with serious illness or at the end of life, caregiving can also be a shared responsibility impacting family systems. According to the National Alliance for Caregiving and the American Association of Retired Persons (AARP), while 6 in 10 caregivers report being the primary caregiver, about 53% also report receiving assistance in caregiving from other informal caregivers. On average, individuals at the end of life identify 2.5 caregivers who help with functional needs.

Currently, 50% of family caregivers are providing care to a parent or parent-in-law, 12% to a spouse or partner, 8% to a grandparent or grandparent-in-law, 6% to a child, and 10% to a friend or neighbor. These caregivers take on a wide variety of tasks, including activities of daily living such as dressing, bathing, and incontinence care, as well as instrumental activities of daily living such as shopping, meal preparation, and financial management. Caregivers may also help manage medical conditions (e.g., give injectable medications, monitor symptoms), coordinate medical care, and make medical decisions. In addition, caregivers often serve important roles in the provision of advocacy, emotional, and financial support. Not surprisingly, the care that is provided directly impacts those who receive care. Negative family caregiver experiences have been associated with a wide variety of outcomes for care recipients including increased preventable hospitalizations, increased health expenditures, nursing home placement, and emotional distress at the end of life.

While not the focus of this chapter, it is important to note that in addition to family caregivers, individuals with serious illness or at the end of life may also rely on paid caregivers in order to remain living at home. Paid caregivers include home health aides, personal care attendants, and other direct care workers, and currently over 3.4 million paid caregivers provide support to those living at home. While paid care is often focused on the completion of functional tasks such as bathing and shopping, evidence suggests paid caregivers also play an important role in assisting with health-related tasks and attending to the social-emotional health of those for whom they care. While data are limited, paid caregivers on the hospice team and those providing care at the end of life may form close bonds with patients and family caregivers in the course of providing care. In addition, many publicly funded programs that support delivery of hands-on care in the home allow care recipients and their families to hire and supervise their own paid caregivers. Known as consumer-directed care, this option may allow family caregivers to be “hired” by the family members they care for and therefore be compensated for care provided.

This chapter addresses current research that examines the impact of providing care for those with serious illness and at the end of life across multiple domains. It then discusses the importance of assessing the caregiving experience. Finally, the chapter summarizes some key points for patients, families, and providers.

How Caregiving Impacts Those Who Provide Care

Many family members readily assume caregiving roles as an extension of a caring relationship, but the significant physical, psychosocial, and financial burdens of caregiving for people with serious illness cannot be overstated. In fact, caregivers are often referred to as “hidden patients” because they suffer from challenges that are associated with the caregiving role. The sections that follow highlight key ways the caregiving experience may impact those who provide care.