Unprecedented caregiver fatigue in America

A record 42 million family caregivers face unprecedented stress since COVID-19

A record 42 million Americans provide care for an aging parent, spouse, or another adult who needs help completing activities of daily living (ADLs).

Among the 54 million Americans age 65 or older, there is a 70% chance that they’ll need long-term care services at some point.¹ For most people, that care is provided at home, often by unpaid family caregivers such as spouses, adult children, and other loved ones.

With the population of Americans age 65 and older expected to grow by almost 50% between the article’s publication and 2040, caregiving in the U.S. is likely to become more demanding.

Paid care in residential communities is expensive and often isn’t covered by Medicare. As a result, many families turn to unpaid care at home, which creates its own challenges as family caregivers manage a wide range of responsibilities.

COVID-19 created unprecedented burdens for family caregivers, especially members of the “sandwich generation” who live in multigenerational households with their older parents and their own children.

This article explores family caregiver fatigue in the U.S., including its toll on the people providing care and the states where caregiver strain may be greatest.

Key findings

• One in six adults cares for a relative age 50 or older who has an illness or disability.

• Among employed family caregivers, 60% work full time.

• Family caregivers’ out-of-pocket costs average 26% of household income, with higher shares among Latino caregivers at 47% and African American caregivers at 34%.

• Paying private care providers for the services family caregivers provide costs about $28,000 per year.

• Hawaii, California, and Texas have the most multigenerational households.

A record number of Americans serve as family caregivers

A record 42 million Americans, or roughly one in six U.S. adults, provide care for relatives over age 50 who have illnesses or disabilities, according to AARP’s most recent estimates. That figure grew by nearly 25% over the previous five years as the Baby Boomer generation continued to age.

Parents make up the largest group of care recipients by relationship. About 50% of people caring for an adult provide that care to a parent or parent-in-law. Spouses are the next-largest group at 12%.

Women are more likely than men to provide care to family members or other loved ones, accounting for 61% of family caregivers. Women providing care are also more likely to support more than one person, at 27% compared with 20% of men providing care.

About 40% of care recipients live in their family caregiver’s home. The country also saw a slight increase in multigenerational households over the previous decade, according to the U.S. Census Bureau. At the time of the analysis, just under 4% of households included people from multiple generations. The rate was highest in Hawaii at 7.3% and lowest in North Dakota at 1.2%.

Family caregivers are also more likely than not to be employed, and 60% of employed family caregivers work full time. At the time of publication, most states didn’t guarantee paid family leave. California, Connecticut, the District of Columbia, Massachusetts, New Jersey, New York, Rhode Island, and Washington were the exceptions. Without paid leave, many family caregivers face a “double shift,” finishing their paid workday and then providing unpaid care to an adult loved one.

At the time this article was published, the Build Back Better bill, a central part of President Joe Biden’s economic agenda, would have increased funding for long-term care and provided four weeks of paid family and medical leave. After passing the House, however, the bill stalled as key senators withdrew their support.

Caregiver stress can affect physical and mental health

Even when a serious illness doesn’t require around-the-clock support, family caregivers may spend the equivalent of part-time work hours providing care. According to AARP research, they spend an average of about 24 hours per week on care-related tasks.

Many of these tasks don’t involve personal or medical care. They include managing finances at 58%, doing housework at 76%, and providing transportation at 80%. Even before the pandemic, these responsibilities took a toll.

Over the six years covered by the research, the share of family caregivers who rated their health as fair or poor nearly doubled, rising from 12% to 21%. In addition, 23% said providing care for a loved one came at the expense of their own health.

The COVID-19 pandemic increased the burden on adult children caring for aging parents, particularly those without living siblings, according to a study published in Gerontology and Geriatric Medicine. Among all adult children caring for a parent, self-rated burden increased by about 3 points compared with pre-pandemic stress.

Those without siblings reported a 7-point increase, compared with about 2 points among adult child caregivers with siblings. The World Health Organization reported-on March 2 that COVID-19 triggered a 25% increase in anxiety and depression worldwide.

Family caregivers face financial strain

Along with providing care on top of their work responsibilities, many family caregivers experience financial strain. Almost 80% report paying out-of-pocket costs, spending an average of $7,242, or 26% of their income, per year, according to an AARP analysis.

The financial strain was greater for some racial and ethnic groups. Hispanic and Latino caregivers spent 47% of their income, while African American caregivers spent 34%.

What does paid caregiving cost?

Among family caregivers whose relatives don’t live in a nursing home or assisted living community, only about 31% receive any paid caregiving help. One major reason, reflected in the AARP study cited earlier, is that paid care services can be expensive and often aren’t covered by Medicare.

For example, Medicare covers certain skilled nursing care, but it doesn’t cover services such as homemaking or personal care. These responsibilities often fall to family members, and paying others to handle them can quickly add up.

Nursing home stays, also called skilled nursing community stays, were the most expensive type of long-term care in the cited data, according to an analysis by Genworth. A semiprivate room cost nearly $100,000 per year. Even less expensive services could be unaffordable. Based on the average 24 hours per week that family caregivers spent providing care, hiring paid caregivers to cover those hours for one year would have cost about $28,000, according to Genworth’s data. In Colorado, Minnesota, and Washington, the cost exceeded $40,000.

Even when families can afford paid care, a limited supply of workers may make it difficult to find help. For example, a Maine program that pays for in-home aides for older adults with low incomes had a waiting list lasting months or even years.

The analysis considered registered nurses, nurse practitioners, licensed practical and vocational nurses, nursing assistants, and home health and personal care aides. Based on data from the U.S. Bureau of Labor Statistics and U.S. Census Bureau, families in Florida, Hawaii, and Nevada were most likely to have difficulty finding workers to help provide care. The District of Columbia, New York, and Minnesota had the highest proportion of these professionals relative to their older adult populations.

Tips to help families manage caregiving

As the share of older Americans grows, more families may need to decide how to provide care while protecting a loved one’s dignity. These services, resources, and practical tips can help you find support.

Support services for family caregivers

• National Family Caregiver Support Program: This national program provides grants to states to fund support services that help older adults remain at home for as long as possible. Check your family’s eligibility.

• Eldercare Locator: This public service from the U.S. Administration on Aging connects families with services for older adults. Visit the Eldercare Locator website or call 1-800-677-1116 to speak with a specialist.

• Family Caregiver Alliance: This organization is a nonprofit that provides services to family caregivers supporting people with physical and cognitive impairments. Its resources include care planning and services, wellness programs, respite services, and more.

Practical tips for family caregivers

Caring for an aging loved one can be stressful, even under the best circumstances. These steps may help you protect your well-being while staying organized and supported.

• Build a community with other family caregivers: Millions of Americans provide unpaid care for loved ones, so you’re far from alone. Other family caregivers can help you adjust, share practical ideas, and find support.

• Take care of yourself: Supporting your own physical and mental health helps you continue caring for your loved one. Make time for yourself, care for your body and mind, and watch for signs of depression or burnout.

• Stay organized: You may need to speak with medical professionals and other care providers on your loved one’s behalf. Gather the documents you need, including power of attorney if necessary. Keep an updated list of your loved one’s medications, and document any procedures they undergo.

• Ask for help, and be specific: People in your care circle may want to help but may not know what you need. When someone offers, identify tasks they’re comfortable doing and assign them clearly. Laundry, grocery shopping, cooking, and transportation can all be shared among willing helpers.

• Consider respite care: Respite care provides short-term support so a primary family caregiver can take a break or attend to other responsibilities. Some senior living communities offer short-term stays where older adults can receive assisted living support while their families are away or occupied. These stays may also offer a chance to experience senior living. Some organizations provide respite grants to help offset the cost of temporary care.

• Use technology where it helps: Some smart home devices can make it simpler and less intrusive to check on older loved ones and support their safety at home. Services such as Uber Eats, Instacart, and other delivery options can also reduce errands and free up time in your schedule. GoGoGrandparent helps older adults use services such as Lyft or Uber without a smartphone. There are also apps designed for family caregivers that can help you track tasks and important information.

• Consult cultural organizations: Some families find it difficult to provide all the care a loved one needs but also struggle to accept outside help. This may reflect family preferences or cultural perceptions of caregiving. If your family disagrees about who should or can care for an older loved one, know that many families navigate similar conversations. Local community centers or religious organizations may be able to offer resources and guidance.

You don’t have to manage caregiving alone

Family caregiving rose rapidly in the years covered by this research, and the growing share of older Americans suggests that more people may take on this role. While public policies may change the support available, you can also turn to your care circle, community resources, and caregiver programs for help. Start by identifying the task that feels most difficult today, then ask for specific support with that need.