Gayle Robertson Love paints with her daughter and caregiver, Tiffanie Rivers, in Hyattsville, Maryland, in 2021. The rate of family caregivers supporting older adults has soared.
Photo by The Washington Post, courtesy Getty Images
“Without greater public investment, the gap that family caregivers are filling will continue to widen.”
— Jason Resendez
On most days, Tara James begins her morning balancing two demanding roles: one as an employee and another as a caregiver to her 75-year-old mother, who recently suffered another stroke.
She coordinates her mother's medical care, manages her insurance paperwork, helps with daily activities such as bathing and dressing, and keeps track of medications — all while holding down a full-time job at a Washington, D.C., nonprofit.
“It's a labor of love, it's duty, it's exhaustion, it's problem-solving,” James told The Nation's Health. “But now I'm in my mid-50s, and being a woman of color, it takes a toll.”
Despite the heavy workload, James is one of the lucky ones. As the business manager for the Caregiver Action Network — a nonprofit organization that provides education, peer support and resources to family caregivers across the country free of charge — she has paid time off, a flexible schedule, a hybrid work environment and access to caregiving resources. She knows not every family caregiver is so fortunate.
Across the U.S., millions of people are quietly caring for aging relatives or friends as the population grows older and life expectancy rises. They fill pillboxes, manage appointments and help loved ones dress, bathe, eat and more. Many do it while working full-time and caring for their own children.
For years, family and friends — not public or private service programs — have provided the bulk of long-term care for older Americans. A recent Pew Research Center report found that 10% of U.S. adults care for a parent age 65 or older, and another 3% care for an aging spouse or partner.
Caregiving demands intensify as loved ones reach their mid-70s and beyond, and the trend is accelerating. Between 2011 and 2022, family caregivers supporting older adults increased 32% — from 18 million to 24 million — according to research from the Johns Hopkins Bloomberg School of Public Health and the University of Michigan's Institute for Social Research. Among those caring for older adults with dementia, weekly care hours rose nearly 50% — to 31 hours a week.
“Family caregivers are not a supplement to the health care system — they are load-bearing infrastructure,” said Jason Resendez, president and CEO of the National Alliance for Caregiving. “A confluence of forces are pushing the number of family caregivers to historic levels.”
At the center of that shift is a simple demographic reality: Medical advances mean Americans are living longer with chronic health conditions, increasing the need for complex care. About 10,000 Americans turn 65 each day, and by 2030 all baby boomers will be at least 65. By 2034, as birth rates fall, older adults are projected to outnumber children for the first time in U.S. history, resulting in a far lower pool of potential future caregivers. By 2050, adults age 85 and older are expected to triple.
“The health and long-term care systems were not built to absorb this volume,” Resendez told The Nation's Health. “Without greater public investment, the gap that family caregivers are filling will continue to widen.”
Caregiving in the U.S. is not distributed evenly. Women, people of color and lower-income Americans are significantly more likely to shoulder unpaid care. Nearly 40% of lower-income adults with aging relatives are caregivers, compared with 23% of middle-income and 16% of higher-income adults. Such disparities may have consequences for caregivers' own financial, mental and physical health, and ability to stay in the workforce.
The crisis comes amid a major workforce crisis in nursing home care. Nationally, more than half of nursing home staff leave their job after just a year.
Family caregivers now perform tasks once managed by trained professionals, including coordinating appointments, managing medications and navigating fragmented care systems. As such, many become the “default coordinators of care,” said Jennifer Wolff, PhD, MHS, co-director of the Hopkins Economics of Alzheimer's Disease and Services Center at Johns Hopkins University's Bloomberg School of Public Health.
Cookie Jones, left, quit her job to provide care to her mother Valerie, who has Alzheimer's disease. She is one of millions of unpaid family caregivers in the U.S. helping older adults as the population grows and health costs increase.
Photo by Tyler Russell, courtesy Connecticut Public Broadcasting/Getty Images
“Family caregivers typically fall into their role without any preparation or training, with no scope of practice, and deliver care in varied home and community settings that may be poorly suited for the types of activities and care that is needed,” Wolff told The Nation's Health.
The strain is significant. A 2023 AARP and S&P Global survey found 67% of caregivers struggle to balance work and caregiving. More than a quarter have reduced their work hours, while others have turned down promotions, left jobs or changed employers.
The burden is also financial. Research shows that caregivers spend about $7,200 each year on expenses such as transportation, medical supplies and home modifications.
“The largest number of calls we get are about finances, even more than disease-specific questions,” said Caregiver Action Network CEO Marvell Adams, MHA. “For most Americans, that burden is unsustainable.”
At the same time, the unpaid labor of family caregivers — valued in hundreds of billions of dollars annually — remains largely invisible in the health system.
“If caregivers didn't show up tomorrow, our entire health care system would crumble,” Adams told The Nation's Health.
The formal system of home care aides and nursing home staff is already strained and relies heavily on immigrant workers, who make up roughly a quarter to a third of the long-term care workforce. At the same time, immigration policies are tightening, reducing both the current workforce and the pipeline of future workers. The result is a widening gap between need and capacity — one that families are increasingly asked to fill.
“Many stakeholders have been saying this situation is unsustainable for a long time now, and yet we keep muddling through,” said R. Tamara Konetzka, PhD, a health economist at the University of Chicago. “The government has typically assumed that caregiving is free — that public dollars don't have to pay for family caregivers — so it's an easy way out of trying to find the money and the political will to fill the gap.”
But that assumption ignores the broader economic ripple effects, she said, noting that the costs of caregiving extend well beyond the individual household.
“Researchers and advocates have recognized for years that there are economic costs to caregiving, both direct and indirect,” Konetzka told The Nation's Health.
Those losses do not disappear — they shift, she said. For example, caregivers who are not in the labor market may use publicly subsidized health insurance. They might also be less prepared financially for retirement.
In the absence of broad federal solutions, some states have expanded Medicaid programs that cover home- and community-based care or allow family members to be paid caregivers. All states and the District of Columbia pay family caregivers through Medicaid. But the rules, requirements and payment rates vary. Expanding Medicare to cover more home-based, long-term care would bring support to a broader share of the population, policy experts say.
“The problem with Medicaid is that fewer than 1 in 5 older adults is eligible and enrolled,” Konetzka said. “This leaves a huge gap for the middle class.”
As pressure builds, the public health landscape is exploring ways to support caregivers. Some efforts focus on recognizing caregivers as part of the health care team, providing them with training and integrating them into health care systems.
One federal initiative, the National Family Caregiver Support Program — established under the Older Americans Act — provides grants to states and territories to fund various supports to help family and informal caregivers aid older adults in their homes for as long as possible. Starting July 1, Washington state's WA Cares Fund will allow residents in certain pilot counties to use earned benefits for long-term care, including hiring family members as paid caregivers. The program provides up to $36,500 for in-home services, home safety modifications and caregiver training.
Other initiatives emphasize workplace support. For example, the Caregiver Action Network builds “caregiver-ready workplaces” by providing resources and training to companies and encouraging flexible policies such as hybrid schedules and expanded leave. Demand for the training is growing, Adams said. In recent years the organization has provided services, including webinars, to such disparate workplaces as Habitat for Humanity, the Federal Bureau of Investigation and a host of private companies, defense contractors and retailers.
The organization is also using immersive tools and storytelling to help federal lawmakers grasp the realities of caregiving. In one initiative, the organization teamed up with a company that provides caregiver training through virtual reality and invited Capitol Hill lawmakers to use the technology to experience life from the perspective of a caregiver. Advocates also bring caregivers to Capitol Hill, Adams said, ensuring that policy discussions are grounded in lived experience rather than abstract data.
“Employers are waking up to the fact that they can either support working caregivers and retain them…or lose them,” Adams said. “When you present a caregiver with the difficult choice of choosing between their job and their caregiving role — no matter what happens in the short term — eventually the caregiving role is going to win, because it should.”
For more information, visit www.caregiveraction.org and www.caregiving.org.
- Copyright The Nation’s Health, American Public Health Association
