Challenge No. 1: Navigating the caregiving world is complex and confusing
Think of the giant industries built around marriage, child-rearing or setting up a home: Each has a wealth of books, magazines, celebrity experts, websites, dedicated brands, even retail stores. Then try to think of the equivalent for in-home caregiving. Right.
Unlike other major life transitions, there is precious little infrastructure to guide someone who must make long-term adjustments to their home, career, schedule and finances to care for an aging parent or another loved one. Compounding the issue is that caregiving situations often emerge without much time for planning.
“What do you do when your parents’ health is literally falling apart and somebody has to take care of them?” asks Kitty Eisele, a longtime NPR journalist and host of Twenty-Four Seven: A Podcast About Caregiving. After her father’s health declined, Eisele moved into his suburban Washington, D.C., home to care for him. “I was starting to feel really overwhelmed. Like, where’s the road map for this? Isn’t there someone who’s supposed to be in charge?”
Looking to the federal government will lead a caregiver into a labyrinth. The Department of Health and Human Services, a logical place to start, lists Resources for Caregivers, with links to Alzheimers.gov, Medicare.gov, the National Institute on Aging and the Administration for Community Living (ACL). Few would know that the ACL, and its subsidiary operation, the Administration on Aging, are the primary parts of the federal government dedicated to caregiving services.
The ACL has an annual budget of just over $2 billion; the Biden administration announced an additional $150 million last year to expand the public health workforce for those who serve older adults and people with disabilities. The largest chunk of that recent funding — $49.8 million — is going to state units on aging and area agencies on aging (AAA). Those are the closest thing to a one-stop shop for caregiving guidance.
These area agencies on aging, which can be found by searching the Eldercare Locator at Eldercare.acl.gov, offer myriad services: assisting in creating caregiving plans; identifying other services; and offering guidance with transportation, respite care, counseling and support groups, caregiver education classes, and emergency needs. There are more than 600 area agencies on aging nationwide. Their patchwork nature — with various names and services — can be a help but can also feed into the confusion.
Sandy Markwood, CEO of USAging, the association representing and supporting the network of AAAs, points to the RAISE (Recognize, Assist, Include, Support and Engage) Family Caregiving Advisory Council that last year sent a report to Congress with 26 recommendations for better caregiver support. The RAISE Family Caregivers Act, signed into law in 2018, tasked the Department of Health and Human Services with establishing a national family caregiving strategy.
Next up is implementation — “using that as a road map to build out,” Markwood says. Overall, she says the system needs to recognize, support and reward caregivers. “It needs to be a movement,” she adds. “And it needs to move pretty quickly.”
Challenge No. 2: The lack of workplace support
Caregivers spend on average about 24 hours per week tending to a loved one in need, according to a 2020 study by the National Alliance for Caregiving and AARP. Try juggling that time commitment with a full-time job.
The easiest answers to the balance, advocates say, are flexible work arrangements that include paid leave. But selling that concept to businesses and lawmakers has been slow to catch on. Unlike many other industrialized countries, the U.S. does not have a nationalized standard for paid family and sick leave.
The Family and Medical Leave Act (FMLA) is the federal law covering a right to time off in such circumstances, providing job protection for caregivers and 12 weeks of unpaid leave, but not paid time off. And only 56 percent of the workforce is even eligible; others are not covered because the size of the company they work for exempts it from the law or they don’t work enough hours.
The FMLA also has a narrow definition of who qualifies: minor children, parents and spouses. If you’re caring for another loved one, you’re out of luck.
But even without a government mandate, some large companies are taking it upon themselves to offer paid time off for caregiving, especially as the pandemic forced a reassessment of work-life balance and many workers demanded more flexibility. A Kaiser Family Foundation survey in 2021 found that nearly 4 in 10 workers were employed at a firm that began to offer or expanded paid leave benefits during the COVID pandemic. Cisco, a tech company that ranked number 1 on Fortune’s 100 Best Companies to Work For in 2021, allows up to 20 paid days per year of critical time off, and expanded that benefit to offer paid time away for caregiving. “In a recent employee survey, we found 63 percent of our people consider themselves caregivers,” says Ted Kezios, vice president of global benefits at Cisco, adding that the company wanted to be diligent “in supporting our employees and leading with empathy, compassion and understanding.” The company also introduced a U.S. caregiving concierge service during the pandemic to offer one-on-one help to caregivers.
Still, in 2021, only about a quarter of U.S. workers had access to employer-provided paid family leave, according to the Bureau of Labor Statistics. Legislative progress is happening at the state level. Nine states and the District of Columbia have paid family and medical leave laws on the books. One of the most recent to get on board is Colorado, where a paid sick-leave law and an expanded family-leave law were recently passed. The paid family and medical leave law entitles workers to 12 weeks of paid time off a year for a covered purpose.