Caregiving takes heavy financial, physical, mental toll

Ample anecdotal evidence suggests that the pandemic has significantly increased the burden on caregivers, and a new study has quantified the impact.

“There are both challenges and opportunities associated with caregiving,” according to a report from the UCLA Center for Health Policy Research. The challenges, it says, are well-documented by many studies, “including decreased use of preventive health services, increased risk for negative physical and/or mental health outcomes and missed opportunities that result from the reduced time spent nurturing other important relationships and responsibilities, both at home and in the workplace.”

In 2020, an estimated 6.7 million people in California were caregivers, defined as adults who reported providing help in the previous 12 months to a family member or friend with a serious or chronic illness or disability.

The first California Health Interview Survey data about caregivers available in more than a decade indicates that a sizable proportion of family and friend caregivers in California are struggling financially, experiencing physical or mental health problems, and receiving little if any financial support for their caregiving responsibilities. In 2020:

• One in four California caregivers provided 20 or more hours of care to a family member or friend in a typical week, yet only around one in 11 received payment for any of the hours spent providing care.
• More than 20 percent reported that caring for a family member or friend was “somewhat” to “extremely” financially stressful, with Black (28 percent), Asian (23.4 percent) and Latin (22 percent) adult caregivers more likely than white adult caregivers (17.7 percent) to report this experience.
• In addition to financial concerns, about one in seven caregivers reported a physical or mental health problem during the previous 12 months because of caregiving.
• Fewer than 1 percent of California caregivers reported using employment-based leave benefits to support their caregiving responsibilities in 2020.

The financial costs alone are enormous. The value of unpaid caregiving in 2017 was estimated at around $470 billion nationwide and $63 billion in California.

In addition to the substantial number of hours given to providing uncompensated care, time spent on caregiving often results in “opportunity costs” (such as missed opportunities for educational or career advancement) and less time spent on self-care and social needs.

Furthermore, many family caregivers also assume out-of-pocket costs for care-related household and medical expenses, estimated at an average of $7,242 per year nationally.

Not all of the burden can be measured in dollars and cents. In 2020, 13.5 percent of all caregivers reported suffering a physical or mental health problem caused by caregiving in the previous 12 months.

The largest proportion of caregivers (48 percent) provide about one to five hours of care during a typical week. Among these caregivers, about 12 percent report having had a physical or mental health problem in the previous year because of caregiving.

For caregivers who provide 30 or more hours of care (or the equivalent of a full-time job), the percentage reporting a physical or mental health problem nearly doubles, to around one in five.

The report recommended several policy actions to ease the burden on caregivers:

• Increase awareness, make access easier for family caregivers and encourage uptake of the paid family leave benefit in California — for example, by promoting it through the Employment Development Department, employers and human resource administrators, aging and disability resource centers, and community/ local media efforts.
• Include a mandatory caregiver assessment as part of all health and social services intake processes. Engage health and social services providers to systematically identify and assess caregivers’ financial, health and social-care needs and connect them to appropriate benefits and resources.
• Enhance and expand the reach of existing caregiver support programs — and introduce new ones — that help reduce caregiver financial stress and prevent or address their emergent physical and mental health care needs. More financial and supportive resources need to be dedicated to bolstering these efforts to assist caregivers.

“With one in four California adults providing care to a family member or friend with a serious or chronic illness or disability, more financial and supportive resources need to be dedicated to bolstering these efforts to assist caregivers,” the report concluded. “Supporting the needs of family and friend caregivers is critically important to ensure that they can continue to provide essential care to their family member or friend, while not compromising their own health and well-being.”