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.
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“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.
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How does Colorado make this work? It has set up the program as a form of insurance; the premium is initially set at 0.9 percent of wages, split 50/50 between worker and employer and paid through a payroll deduction. That means a person earning the average salary of $63,000 in Colorado would pay $5.45 per week.
“The reality of this social insurance program is it helps small businesses” because it’s a statewide pool, says Jared Make, vice president of A Better Balance, a nonprofit organization that focuses on care and family work policy issues. “It allows them to compete with the Googles — who are offering paid leave to attract and retain talent and workers.”
Make says the state laws have been “a clear success” and that Congress “should pass a federal, comprehensive” leave program modeled on the state laws. “We’re way behind as a country,” he says, “but we’re starting to see some of the conversation shift.”
Challenge No. 3: The high financial cost to families of caregiving
Caregiving can be costly — for the recipient, for the caregiver, for the economy. AARP research found that more than three-quarters of family caregivers spend their own money on caregiving. In 2021, the annual average was $7,242. Caring for someone with dementia boosts that figure to nearly $9,000. And then there’s the cost of time. A 2019 study put the estimated economic value of unpaid caregiver work in 2017 at $470 billion.
There are other economic ripple effects to caregiving. More than 75 percent of people age 50-plus who retired early because of family caregiving responsibilities would have stayed in the workforce longer if they had access to better financial support or work support, a recent AARP study found.
“My income took a hit,” says Eisele, the podcaster. “All my savings for retirement took a hit. You don’t set out to do this, thinking it’s going to go on for three years.”
If you’re caring for someone and trying to hold down a job, you might think of hiring in-home help. That, too, is costly. In 2021, you could expect to pay $5,148 a month — the national median — for a private home health aide, according to Genworth, which tracks the cost of care. If the care recipient is able, a less expensive option is to use an adult day program, with a monthly median cost of $1,690, as of 2021.
Seeking positive change
AARP is fighting for family caregivers and for all older Americans to have access to high-quality, affordable options when it comes to long-term care – especially at home. Here are some of the ways.
- Family caregiver tax credit AARP is pushing for the federal Credit for Caring Act, which would provide a tax credit of up to $5,000 a year for eligible working family caregivers. The credit would apply to those who do not live with the person they are caring for and those who care for nondependents.
- Paid leave AARP is fighting for workplace policies that would guarantee paid leave for family caregivers.
- Home care and community services AARP supports expanding Medicaid services to help more people remain in their homes. AARP is also urging Congress to make investments to expand access to Medicaid home care and support for care workers.
- Building a “long-term care workforce” AARP urges lawmakers at the federal and state level to support efforts to increase pay and benefits for care workers, back improved training and ensure a positive and inclusive workplace.
- More care options AARP has urged expanded care at home through Medicare, including a new option for care after some hospital stays.
- State-level help AARP State Offices across the country are fighting for family caregivers and to improve long-term care.
Medicare in most cases does not pay for in-home care for basic services. “One of the greatest misconceptions people have is that there will be a safety net to catch them. And there isn’t,” says Robert Espinoza, vice president of policy at PHI, an advocacy group for the direct care workforce, which includes home health aides.
Long-term care insurance policies were once thought to be a solution, but insurers found they had underestimated how much they would have to pay in claims and had miscalculated returns on investments because of low interest rates. This prompted many companies to stop selling the policies. Today, policies are still available, but they aren’t very popular. Only some 49,000 new policies were sold in 2020, according to the American Association for Long-Term Care Insurance. Cost might be one reason. A single 55-year-old male will pay $950 annually for a premium with an initial benefit amount of $165,000. A single 55-year-old female will pay $1,500 for the same policy.
“It’s a product that is not inexpensive,” says Jesse Slome, director of the American Association for Long-Term Care Insurance. “And there’s no sense of immediacy that you have to purchase it — unlike other insurance. You can’t buy a house and have a mortgage without homeowner’s insurance.” He adds: “There’s a certain type of person that buys it. They can afford it and they plan. Not everybody is a planner. And most importantly, you have to be in good health when you apply for this coverage. We have a nation that’s not in particularly good health.”
Some financial help may be on the horizon: the Credit for Caring Act, introduced in Congress in May 2021. The bipartisan, AARP-supported bill would provide up to $5,000 in federal tax credits for eligible working family caregivers. Qualified expenses include respite care, home modifications and hiring home care aides, as well as assistive technologies and transportation.
Another option can be found in certain Medicare Advantage plans that offer coverage for more services, including home health aides to help with caregiving. In 2018, the Centers for Medicare & Medicaid Services (CMS) expanded the scope of “primarily health related” supplemental benefits for those private plans. Now some plans may offer gym memberships, transportation to doctor’s appointments, healthier food options and grab bars in bathrooms, and may even cover the cost for a person with chronic asthma to have their carpets deep-cleaned to help control the condition.
Challenge No. 4: A shortage of well-trained, reliable caregivers for hire
Paul McCartney famously wondered if someone would feed him when he turned 64. That question, for many older Americans, has become a very legitimate concern. As the number of older adults increases, the demand for home health and personal care aides is projected to grow by 33 percent from 2020 to 2030, according to the U.S. Bureau of Labor Statistics. That rate of increase is much higher than the average for all occupations.
“We’ve been warning of a workforce shortage for years,” Espinoza says. According to the Bureau of Labor Statistics, in 2021 the mean hourly wage for home health and personal care aides was $14.07, and the mean annual wage was $29,260.
In every state and the District of Columbia, the direct care worker median wage is lower than the median wage for other occupations that have similar entry-level requirements, according to a 2020 PHI report. That includes janitors, retail clerks and customer service representatives. “In many states, McDonald’s and Macy’s will swoop these candidates up with easier entry points and training,” Espinoza says. “We need to figure out the compensation piece.”
Some states are finding creative ways to boost recruitment and retention in the paid caregiver workforce.
In Wisconsin, the WisCaregiver Careers program was launched in 2018 as a public-private partnership between the state Department of Health and nursing home provider associations, generating interest from 9,000 recruits for 3,000 nursing home aide slots through marketing, free training and a $500 retention bonus. “We were competing against the big-box stores and coffee shops, so it was really gratifying to get that much interest,” says Kevin Coughlin, policy initiatives adviser for Wisconsin’s Department of Health. A new iteration of the program about to get underway will expand it to include jobs as home health care workers, not just positions in nursing homes.
In New Mexico, the Encuentro Home Health Aide program (HHA), is focused on creating career pathways for immigrants who speak Spanish to enter into eldercare to serve the needs of Spanish-speaking communities. The emphasis is on HHAs to be independent contractors, not signed with an agency, allowing the care worker to make a higher wage. In 2021, both part-time and full-time Encuentro graduates “were making an average of $17.50 an hour,” says Mayte Lopez, home health aide training specialist for Encuentro. “Those HHAs at an agency were making an average of $11.50.”
Challenge No. 5: Lack of transportation options
One of the biggest logistical headaches for both caregiver and care recipient is the act of transporting loved ones to a destination — to the store, to medical appointments, to treatment centers, to visit with friends. According to a 2018 National Aging and Disability Transportation Center survey, about 40 percent of caregivers spend at least five hours a week providing or arranging transportation. And if a ride can’t be arranged? One older study published in the Transportation Research Record: Journal of the Transportation Research Board found that about 3.6 million people in the United States in a given year did not get medical care because of transportation issues. Not being able to get out also adds to a sense of isolation, which has been associated with increased risk of serious health conditions.
Community transportation programs are available; one such program is Dial-A-Ride, usually funded by a local government and made available for passengers 65 and older or for those who qualify under the Americans With Disabilities Act. Volunteer transportation programs, such as Shepherd’s Centers of America, are available; Shepherd’s dispatches volunteer drivers from more than 55 affiliate centers across the country each day.
Medicare will typically cover only emergency medical trips, such as those requiring an ambulance, except in certain chronic and debilitating cases, so relying on Medicare isn’t the solution. But because of changes that took effect a few years ago, more Medicare Advantage plans began offering transportation benefits; 2020 saw an increase of 25 percent from the previous year, according to the Medical Transportation Access Coalition.
Denver Health was one of the first hospitals to partner with a ride-booking company. In 2017, after an elderly patient had been waiting for several hours for transportation that never came, hospital administrators knew that something needed to be done. A partnership with Lyft made a difference, says Amy Friedman, Denver Health’s chief experience officer.
“We utilize them every day,” says Friedman, adding that the hospital provided 5,800 rides — “almost 16 a day” — in 2021. She notes that the program is funded by the Denver Health Foundation, a separate philanthropic organization, and that it is only for patients who have no other option. “It needs to be a last resort.”
San Antonio–based SafeRide Health has a partnership with Lyft. SafeRide makes software that will make arranging such rides even easier. “We want to make sure we can make transportation as accessible as possible in one click,” says Andy Auerbach, chief revenue officer at SafeRide Health, saying that when a patient makes an appointment, the next question should be, “Do you need a ride? Great. One button.”
Challenge No. 6: Inequities exist within the system, causing disparities in the caregiving world
Think family caregiving is hard? It’s particularly difficult in communities of color, where there’s less access to health care, more people hold hourly wage jobs, people often do not trust government officials who may try to provide help, and housing may be substandard. “These issues are really baked into the system,” says Edem Hado, policy and research manager for the AARP Public Policy Institute.
A 2021 analysis by the Commonwealth Fund, a private foundation dedicated to health care issues, found that health care systems in every state are “failing” many people of color. Even in states that were found to be “high-performing,” many people of color received “much worse” health care than white people.
The National Institute on Aging has laid out a “Strategic Directions for Research, 2020–2025” plan; one of its goals is to “understand health disparities related to aging and develop strategies to improve the health status of older adults in diverse populations.”
“Politicians will say, ‘Show me the data,’ ” Hado says. “If we’re not collecting it in a way that reflects different groups, where’s the support there?”
But Jan Mutchler, director of the Gerontology Institute at the University of Massachusetts Boston, says the issue needs to be addressed through an even broader lens: Building up vulnerable communities in general will also improve caregiving. “Policies going all the way back in the life course to maternal care, day care, preschool — everything that shapes accumulation of health and human capital are relevant in thinking about what has to happen to establish a more equitable old age.”
Ann Oldenburg, a former USA Today reporter, is assistant director of Georgetown University's journalism program. She has a master's degree from Georgetown's Aging & Health program and spent several years as a full-time caregiver to her mother.
Caregiving Resources & Tools
- AARP has created a group on Facebook where family caregivers can share practical tips, offer support and discuss experiences
- AARP’s Family Caregiving Guides can help you develop a plan for a loved one or friend
- State guides help family caregivers discover programs and services in their communities
- AARP created a financial workbook to help family caregivers manage complex responsibilities
- The Community Resource Finder is a database of dementia and aging-related resources