Who Are Family Caregivers Of Seniors And People With Disabilities?

The typical family caregiver is a 50-something woman who spends 27 hours a week caring for an aging parent who has two or more serious medical conditions, and is doing so with little outside assistance, according to a new survey by the National Alliance for Caregiving and AARP.

While that describes a typical caregiver, many different family members serve as caregivers, and many kinds of people are being helped. For example, the survey, called Caregiving in the US, found that 4 million children under age 18 are helping to care for relatives with physical or cognitive limitations.

The study is valuable because it is the fifth in a series going back to 1997. Strikingly, while it shows some important changes, the basic story remains the same: Millions of Americans are struggling to care for relatives who increasingly need help with their daily activities, from bathing to shopping.

Counting Caregivers

The new study estimates that in 2024, about 63 million people were caring for aging parents, spouses, or children with disabilities and serious illnesses. That’s an increase of 16 million in the past decade.

The survey counts anyone who has provided “ongoing care over the past year to adults or children with complex medical conditions or disabilities.” It defines family caregiving “as providing ongoing supports and management of complex care tasks for children and adults with chronic, disabling, or serious health conditions.”

About 41 million of those being cared for are age 65 or older. Other research has come up with somewhat lower estimates. For example, Jennifer Wolff and colleagues at the Bloomberg School of Public Health at Johns Hopkins University, estimated 24 million family members were caring for older adults in 2022, up from 18 million a decade earlier.

Similarly, in 2023 the Bureau of Labor statistics estimated 37 million family members were providing care for older adults.

Why the differences? Different years. Surveys ask different questions. And all these studies are based on self-reporting by individuals, and family members may characterize their roles differently. Sometimes, for example, a daughter won’t call herself a caregiver. She is just…a daughter. Caregivers, she may believe, are the people who are paid to assist others.

Who Are They?

Like other studies, the NAC/AARP survey found that while most family caregivers are women, about 40% are men, a ratio that has not changed much in recent years. More than half are adult children caring for parents or grandparents. About 15% care for spouses or partners.

Forty percent of family caregivers live with those receiving care, a big increase from a decade ago when the share was only about 34%.

Much is said about the “sandwich generation” who care for both young children and aging parents. The new study finds about 30% of all family caregivers also have young children or grandchildren living with them.

Not surprisingly, caregivers under age 50 are most likely to be caring for both young children and older adults. Nearly half of that group are sandwich generation caregivers.

About two-thirds of working-age caregivers are employed and half of them say caregiving affects their ability to work, reporting they go in late, leave early, or take time off to provide care.

What Do They Do?

Only about one-third of family caregivers have paid help, most often they are people who work themselves and who have relatively high incomes.

Those providing care for very long durations are most likely to hire aides to assist them, as are nearly half of those caring for loved ones with dementia.

About one-third of family caregivers report assisting loved ones for five years or more. Three-quarters say they provide 20 hours or more of care a week and one-quarter report 40 hours or more, or the equivalent of a full-time job.

More than half provide the kind of medical care that normally would be done by a nurse. But only about one-in-five say they have been trained to do these tasks.

Most act as care navigators for their loved ones: 70% monitor their health conditions, two-thirds communicate with their doctors, and nearly 60% advocate for care recipients’ needs with providers, community services, or government agencies.

Regrettably, care coordination isn’t getting easier, despite growing attention to the need. Only about 70 percent of those surveyed say they are included in care planning, with younger caregivers even less likely to be involved. About 58% say coordinating care with health professionals is easy, down from 65% in 2015, and from 59% in 2020.

Similar to other surveys, respondents are looking most of all for financial support. Roughly 70% favor such assistance, though higher-income caregivers prefer tax credits while those with lower incomes favor direct payments. About one-in-four would like respite services, while one-in-three identify emotional support and professional assessment of their needs.

A Worsening Problem

The NAC/AARP report may vary from others in the details. But whatever the numbers, it is fair to say that a lot of Americans—tens of millions—are caring for their loved ones. They are making enormous financial, emotional, and physical sacrifices to do it.

Their numbers are increasing rapidly as the population ages and more people of all ages with disabilities remain at home, and for longer. And they are getting remarkably little support from the health care system or the government. That’s especially true of those who care for people who do not qualify for government programs such as Medicaid.

The problem is bad and getting worse, no matter how you count it.