I was a caregiver for my dad. It was extremely rewarding. And incredibly difficult. It was, in fact, the hardest thing I ever have done. Many family care partners pay a high physical, emotional, and financial price for what they do.
Now, as Congress is debating major policy changes aimed at making the lives of family caregivers easier, we are getting a clearer picture of the cost of caregiving, especially for low-wage workers who are struggling to balance paid work helping their loved ones. The bottom line: It is very, very hard.
A new study by the Rosalynn Carter Institute for Caregivers finds that one in five full-time workers cares for a family member with a serious illness or disability. Nearly 20 percent of them said they had to quit a job to care for a relative and 40 percent said they had to go to part-time work.
Three-quarters said they have had to leave work early to care for a loved one, 70 percent took time off and 60 percent had to take two or more days off.
More than half said they lost income due to missing work and nearly half said they passed up opportunities for promotions. While the financial and career cost for many was high, their biggest challenge by far was the emotional stress of trying to balance work with caregiving responsibilities.
The survey, by the firm Public Opinion Strategies, surveyed family caregivers aged 18-70 who were working full-time.
The survey found significant differences by age, race, income, and firm size when it looked at how caregiving affected work. In general, those low-wage workers whose financial situations are most perilous are most at risk of losing their jobs.
Low-wage hourly workers with less education are significantly more likely to quit a paid job to care for a family member than higher-income, better educated workers.
For example, while about 19 percent of respondents overall said they had to quit their jobs to care for a family member, 30 percent of Hispanics lost jobs. Similarly, 35 percent of those with a high school degree or less, 26 percent of hourly workers, and 28 percent of those making less than $40,000-a-year gave up paid work to care for a family member.
By contrast, about 14 percent of those with college educations, 11 percent of salaried workers, and 12 percent of those making $80,000-a-year or more had to quit their jobs.
Interestingly, about one-quarter of those who left their jobs worked for small businesses, compared to about 17 percent or 18 percent who worked for larger firms.
Even as these family members struggle to hang on to their jobs or at least maintain regular hours, they are paying a substantial amount of money out-of-pocket to help support the care of their loved ones. A June, 2021 study by AARP finds that three-quarters of family caregivers spend some of their own money for such care. They pay an average of more than $7,000 a year, or, on average, one-quarter of their income. And those in the most difficult caregiving situations or who face high levels of stress at work often spend the most out of pocket.
Employee benefits for caregivers
The Carter Institute also asked workers about employee benefits for family caregivers—what were offered and which they used.
Confirming past work by others, by far the most common benefit is flexible scheduling. About half of respondents reported their firms offered some flexibility and 90 percent used it. Many also took advantage of paid or unpaid leave. About half of firms offered unpaid leave compared to 43 percent that provided some paid time off.
The least valuable benefits are employee assistance programs—often phone-based caregiving advice offered by third-party contractors. A bit more than one-third of firms offered the benefit but fewer than half of workers who had access to the support used it.
Family caregivers also reported troubling workplace cultures. Many said they’d be concerned about disclosing their caregiver status to their employers, either because they were afraid they’d lose their jobs or be judged unfairly by their supervisors or co-workers.
Family care partners are the bedrock of our system of caring for frail older adults and younger people with disabilities. Many—especially low-wage workers—risk losing their own jobs or face a significant cut in wages.
Keep in mind that losing a job, or even reducing hours or passing up a promotion, has a cost beyond just immediate foregone wages. It may mean losing health insurance, receiving fewer retirement benefits and smaller Social Security checks, and having less ability to save for a child’s future education or a worker’s own retirement.
Policymakers need to keep this large, but often hidden cost, in mind as they debate caregiver supports.