A tribute to America’s home caregivers, the invisible workforce behind our health care system

The end of the year is approaching and the holidays are in full swing. For many people, it's a time for family vacations or reunions, as well as a break from the daily grind of work and daily life. But for the 63 million Americans whose homes are their daily routine, this month takes on extra meaning. November is National Family Caregiver Month, an observance that recognizes and advocates for those who are dedicated to caring for family members with disabilities or complex medical conditions.

By 2025, one in four U.S. adults will be a family caregiver. Most provide care to older adults, many of whom are parents or spouses of caregivers. They assist with many activities of daily living, daily tasks such as bathing, dressing and eating, helping care recipients maintain health and personal independence.

In addition to these duties, almost all caregivers assist with instrumental activities of daily living, such as tasks such as financial management, housekeeping, and transportation, which help care recipients remain part of the community and live independently. They are also important advocates for care coordination for family members, ensuring they receive adequate care and assisting them with medical decisions and appointments.

Nursing is often invisible and unpaid labor

The labor of caregivers is often invisible and unpaid. A team of public health researchers at the Johns Hopkins Bloomberg School said they are “key to health care for older adults,” accompanying care recipients to appointments and managing their medications and treatment plans around the clock. But their labor is rarely commensurately recognized or supported by the health care system, whether through involvement of health care providers who direct the care of their family members or through financial compensation.

Most caregivers are uncompensated for their labor: A 2021 study by the American Association of Retired Persons (AARP) estimated that the uncompensated contributions of home caregivers are as high as $600 million annually. Since the number of home caregivers now exceeds 150% of the number in this study, today's value is likely to be much higher.

Of the 32 states that reported data in AARP's “Caregiving in America 2025: Caregiving Across States” report, nearly every state has the share of paid family caregivers below 25%, with some states reporting numbers as low as 10%. Those who do get paid mostly through state-level Medicaid waiver self-directed programs, a system that varies widely among states in terms of eligibility and budgets and was destabilized by HR 1's Medicaid cuts.

Although care work is equivalent to a full-time job, most caregivers must take on additional work because their caregiving work is often unpaid; nearly a quarter of caregivers provide more than 40 hours of care per week. Not surprisingly, caregivers report lower levels of fitness and take less time off, with significant numbers of caregivers across states reporting consistently lower levels of physical and mental health.

The “sandwich” generation of caregivers

Many home caregivers in the United States have an average age of 51, and most of them are women, part of the “sandwich generation” who have to care for their parents' seniors while also raising children. This accounts for nearly one-third of nursing staff, a generation that is stretched thin from both sides.

This intergenerational responsibility can also restructure families in important and emotionally rich ways. When older adults become cared for, caregivers must cope with changes in family roles, and in the homes of the 4 million children who serve as support caregivers, primary caregivers and parents often take on additional educational roles.

Medicare policy changes to help caregivers

The responsibility of caring for a family member, especially a parent or older relative who provides care and guidance, can be both burdensome and wonderful for many people. More than half of family caregivers in the United States say they gain a sense of meaning or purpose from their role as caregivers, and many say the experience helps them learn new skills and strengthen relationships with others. Better policies around care and long-term supports and services (LTSS) can preserve the positive aspects of care while mitigating its challenges and stresses.

At Medicare Rights, we believe health care policy reforms are critical to better supporting family caregivers and strengthening the long-term care infrastructure that many Medicare beneficiaries rely on.

Particularly in the context of state funding cuts to Medicaid, which currently provides most of the paychecks for family caregivers, expanding Medicare coverage for LTSS could alleviate financial pressure on caregivers. Making LTSS a standard Medicare benefit and eliminating technical requirements that disqualify beneficiaries from home health care coverage would also strengthen Medicare coverage for care recipients and eliminate undue stress caused by coverage denials and cumbersome bureaucracy.

Home caregivers are care professionals who should receive information and professional training commensurate with the intensity and responsibilities of their work. In AARP's 2025 survey, caregivers in most states emphasized their need for better information, particularly about managing physical and emotional stress and keeping families safe. Training that covers many aspects of nursing work and takes into account the diversity and growing population of nursing staff is a necessary and urgent part of health care reform.

Join us in celebrating family caregivers and recognizing their labor and dedication in providing care and strengthening communities.

Read the AARP report Nursing in America in 2025: Care Across State States.