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March 10, 2025
For weeks, headlines centered on the mysterious deaths of 95-year-old Gene Hackman, who had advanced Alzheimer's disease, and his wife and primary caregiver, Betsy Arakawa. They were found days after Arakawa's sudden death from the rare hantavirus; Hackman was left alone without essential care like food and medication. He died of heart disease a few days later.
The tragedy cast a harsh spotlight on America's invisible workforce of family caregivers, a vital but often unsupported part of the vast network of underfunded, long-term care in the United States.
AARP estimates that nearly 48 million Americans care for another person over age 18—many of whom are aging relatives. As of 2024, Census data shows there are 62 million Americans aged 65 and over; among them, the majority (85%) also have at least one chronic health condition, according to 2023 CDC estimates. As baby boomers age, these numbers are expected to rise: By 2030, S&P Global projects that 73 million people, or 1 in 5 Americans, will be 65 years or older.
The U.S. is "not prepared at all" for this incoming "silver tsunami," Elline Eliasoff, a geriatric care manager and certified dementia practitioner, told Stacker.
"The medical system can keep you alive for a very long time, but we haven't figured out how to keep you alive well … and protect your brain from all the stuff we're giving you to keep you alive," she said.
Over the past 20 years, more older adults have chosen to age at home rather than in nursing homes, according to a 2022 cross-sectional study that observed surveys of millions of people aged 65 and older, published in The Journals of Gerontology. Aging in place often requires at-home caregivers to support the needs of the aging, but the paid caregiving industry is currently unable to meet the growing demands of the rapidly aging population. Professional caregivers are often underpaid, the industry has high turnover, and AARP reports that fewer younger people are choosing the profession.
What's more, about 1 in 4 workers in the long-term care industry are immigrants, according to a study examining data from the 2018 Current Population Survey. Despite previous policy proposals to provide special visas for immigrant workers or put safeguards in place to protect skilled caregivers, they remain vulnerable to exploitation. Now, even as shortfalls persist, immigrant caregivers face an increased risk of deportation.
The scarcity of caregivers translates to greater family responsibility to care for their loved ones. According to the AARP, an additional 9.5 million Americans became family caregivers between 2015 and 2020, with a 2024 Wells Fargo report finding that women make up nearly 60% of these unpaid caregiving roles.
QMedic analyzed academic research, industry reports, and expert opinions to explore the physical and emotional toll on family caregivers in the "sandwich generation." This cohort, typically women in their 30s, 40s, and 50s, care for family members at both ends of the life spectrum—their aging parents and school-aged children.
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Eliasoff joined this "sandwich generation" when her dad entered hospice only a month after her second child was born. She traveled 90 miles to be with her father and give his primary caregiver breaks. Eliasoff managed competing responsibilities, recalling how she would "have to put the baby down to walk my father to the bathroom."
Double-duty caretaking is especially difficult for women employed outside the home. AARP reports that 3 in 5 family caregivers work full or part-time, and 2 in 3 say they struggle with balancing work and family.
"I'm exhausted, tired, and overwhelmed," said 45-year-old marketing consultant Sonya Lynn Cooper, a mother of two. She moved from Washington D.C. to New Jersey to be the primary caregiver to her 98-year-old grandfather, who uses a wheelchair and lives with Cooper's mother, who is 75.
Cooper said stress has caused her hair to fall out, and she's cracked a tooth from clenching her jaw so much. Society for Human Resource Management reports that 20% of employees who took caregiving leave between January 2022 and 2024 later took medical leave, and 15% of those were for mental health reasons, according to a data analysis from a Chicago-based mental health care provider, ComPsych.
The toll of caretaking sometimes impacts Cooper's work, too. Cooper said colleagues note that she's still a high performer, but kind of "off lately." She shrugs it off: "I am juggling the world."
The price of professional caregiving is out of reach for many families, and there is limited financial support for family caregivers. The nonprofit KFF reports that Medicaid homecare programs in most states support self-directed home care, but fewer allow payments to family members. Proposed cuts to Medicaid may worsen support for home and community-based health services.
Professor Rachel Werner, executive director of the Davis Institute of Health Economics at the University of Pennsylvania, noted in a media briefing that aging is often viewed as "a family issue and not a policy issue."
"We don't value older adults the way we do children. And part of that is due to biases against people who are aging or against older adults," Werner said, mentioning that the costs of eldercare aren't discussed as often as child care.
"Comprehensive care to support allowing older adults to age with dignity is really quite costly, and we lack the political will to solve this problem and to really put enough resources into the care of older adults," Werner noted.
In the absence of widespread resources, some families solve the problems of aged care with a "care conga line," with kids, grandchildren, and neighbors filling gaps, Nicole Jorwic, chief program officer at Caring Across Generations, told Stacker.
Family members may also want to meet the desires of family members who wish to receive ongoing living assistance in their own homes, according to a 2021 survey by Data for Progress of registered voters. Most eldercare is provided by unpaid caregivers, and most are women—typically daughters and wives, Jorwic said. Unpaid caregivers provide labor valued at more than $1 trillion annually, according to analysis of 2023 census data by the National Partnership for Women & Families.
As the authors of a 2023 report from the Schwartz Center for Economic Policy Analysis point out, "Narratives around informal eldercare often center middle-income white women given that they have the highest prevalence of caregiving." However, roughly one-third of family caregivers in a low-income household provide daily unpaid eldercare, compared to just 15% of those from high-income households. The study also found caregivers who are Black or white Hispanic are likelier than those who are white non-Hispanic to do this work on a daily basis.
That unpaid labor comes at a steep personal price. To meet their caregiving responsibilities, most workers take time off the job, with half going in late or leaving early, according to the 2024 S&P Global and AARP Employee Caregiver Survey. Roughly 1 in 4 workers cope by working less, and 6 in 10 even turn down a promotion to put family first. Women more often make professional sacrifices, colloquially known as the motherhood (or daughterhood) penalty, or the phenomenon of career opportunities for women who act as family caregivers, contributing to considerable financial strain on their families.
Cooper said she had no choice but to provide care for her family after ruling out care facilities after another family member died in a facility, but they weren't informed until days after.
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Jorwic said that it's important that workplace support and benefits be inclusive of older adult caregivers, as they do for children and people with disabilities.
Only a quarter of working caregivers said they were offered paid leave designated for adult caregiving, according to the S&P Global and AARP study. Some workplaces suggest repurposing vacation and sick leave for caretaking, which makes it difficult for employees to take time to care for themselves. Family caregivers say flexible schedules and telework are helpful; Cooper says her caregiving responsibilities are easier since she works remotely as a consultant.
A variety of companies do offer caregiving support as an employee benefit, however. This may include coaching to guide employees through their caregiving journey or matching them with dedicated care coordinators. But these services aren't offered across the board, and while they can increase retention and productivity, providing caregiving support is ultimately at the discretion of individual companies.
Support from the government consists of a complicated patchwork of programs, and many Americans incorrectly believe that Medicare covers long-term care.
In reality, Werner explains that Medicare only covers medical care and sometimes temporary "long-term" care in nursing homes—increasingly in home-based settings, too—but only for medical needs. About 45% of long-term care is covered by Medicaid, according to KFF.
While AARP calculations show caregivers spend $7,242 of their own money each year, the true cost is likely far higher. In addition to out-of-pocket costs, caregiver expenses are usually under-calculations only based on foregone wages, Werner explained. She estimates that the actual financial cost to the average caregiver ranges from $300,000 to $600,000, which includes loss of health benefits, pensions, social security, and other retirement benefits. The Family Caregiver Calculator can help families project the true costs of caregiving.
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In March 2025, Congress reintroduced two bills to support older adults and their caregivers. The Well-Being Insurance for Seniors to Be at Home Act (WISH Act) would provide social security recipients with a new benefit that covers at-home long-term care costs. In addition, the Credit for Caring Act proposes up to a $5,000 tax credit for eligible families.
In 2000, Congress established the National Family Caregiver Support Program to provide funding for support services for informal caregivers. These services include caregiver training, counseling, and respite care, which allows family caregivers to take a break from their responsibilities. However, according to a 2021 article in the Journal of Applied Gerontology, results about the effectiveness of this program are mixed.
The U.S. may find useful models in other countries that provide comprehensive eldercare support through universal health coverage. However, a change would require shifting how the nation pays for care. Today, the burden is often on family caregivers like Cooper, who said she cashed out her 401(k) savings since her family began caregiving during the pandemic.
Cooper said that the human aspects of caregiving often get lost in policy discussions, and cutting funding can translate to dire consequences for families: "That's a missed appointment for somebody. That's a missed medication … This is life or death. It's not just a game."
Despite enduring the challenges of caretaking, Cooper said she's in a good place. She won't have regrets about not having the time to say what she wanted to her loved ones before they die.
"There are joys in caregiving. It's not always so dire," said Cooper. "There's joy and you've got to just enjoy the moments that you have."
Story editing by Alizah Salario. Copy editing by Kristen Wegrzyn. Photo selection by Ania Antecka.
