Unprecedented Caregiver Fatigue in America

Record 42 Million family caregivers face unprecedented stress since COVID-19

A record 42 million Americans are serving as caregivers for an aging parent, spouse or someone who struggles to complete daily life activities.

Among the 54 million Americans 65 or older, there is a 70 percent chance that at some point, they’ll require long-term care services, and for most people, that care is provided in their homes and often by those who are unpaid, such as spouses, adult children, and other loved ones. 

With the population of Americans 65 and older expecting to grow by almost 50 percent between now and 2040, the state of caregiving in the U.S. is likely to get more daunting.  

Paid care in residential facilities is expensive and often is not covered by Medicare. That is why many families resort to unpaid, at-home care, which creates challenges all its own, as families struggle to manage the tasks that come with such care.

COVID-19 has created unprecedented burdens for caregivers. Especially those in the “Sandwich Generation” who live in multigenerational households with their older parents and their own children. 

We wanted to explore caregiver fatigue in the U.S., including the toll on those normally tasked with it, as well as in which states the strain on caregivers may be the greatest.

A few key findings:

• One in six adults care for adult relatives 50 and older who have illnesses or disabilities
• 60% of employed family caregivers work full time
• Out-of-pocket costs for caregivers are on average 26% of household income and worse for minorities — Latinos (47%) and African Americans (34%)
• It costs $28,000 per year to pay private care providers for the services family caregivers provide
• Hawaii, California, and Texas have the most multigenerational households.

Unprecedented number of Americans serving as family caregivers

As mentioned above, 42 million Americans — roughly one in six U.S. adults — provide care for adult relatives with illnesses or disabilities over the age of 50, according to the AARP’s most recent estimates. That figure has grown by nearly 25 percent over the past half-decade as the Baby Boomer cohort continues to age.

Parents account for the biggest group when it comes to the caregiver’s relationship to the recipient, with about 50 percent of people who provide care to an adult doing so for a parent (or parent-in-law). Spouses are the next-biggest group at 12 percent.

Women are more likely than men to provide care to family members or other loved ones, accounting for 61 percent of caregivers, and female caregivers are more likely to be providing care for more than one person (27 percent vs. 20 percent for male caregivers).

About 40 percent of those receiving care live in the home of their caregiver, and the nation in general has seen a slight increase in the number of multigenerational households over the past decade, according to the U.S. Census Bureau. Today, just under 4 percent of households include residents from multiple generations, though this rate is highest in Hawaii (7.3 percent) and lowest in North Dakota (1.2 percent).

Family caregivers are also more likely than not to be employed, and 60 percent of employed family caregivers work full-time. With most states not guaranteeing paid family leave — California, Connecticut, the District of Columbia, Massachusetts, New Jersey, New York, Rhode Island, and Washington being the exceptions that do — many caregivers are forced into a “double shift” in which they finish their workday and then do more unpaid work in the form of providing care to an adult loved one.

The Build Back Better bill, a central plank of President Joe Biden’s economic agenda, would increase funding for long-term care and provide four weeks of paid family and medical leave, but after passing the House, the bill has languished, with key influential senators removing their support. 

Caregiver stress causing physical and mental health issues

Even in the absence of a serious illness that requires around-the-clock care, family caregivers often spend the equivalent of part-time hours helping take care of their family members, spending an average of about 24 hours per week on various care-related tasks, according to the AARP’s research.

Many of those tasks involve things that do not directly relate to personal or medical care, including managing finances (58 percent), housework (76 percent), and transportation (80 percent). And even before the pandemic, these responsibilities were taking a toll.

Over the past six years, the percentage of family caregivers who say their own health status is fair or poor nearly doubled, going from 12 percent to 21 percent, and 23 percent of caregivers say their efforts to provide care for their loved ones has come at the expense of their own health.

And the COVID-19 pandemic has worsened the burden for adult children providing care to their aging parents, particularly those without living siblings, according to a study published in Gerontology and Geriatric Medicine. Among all adult children providing care for their parents, their self-rated burden rose about 3 points when compared to pre-pandemic stress, while those without siblings reported a 7-point increase in stress compared to about 2 points for adult child caregivers with siblings. The World Health Organization released a report on March 2 that COVID-19 triggered a staggering 25% increase in anxiety and depression worldwide. 

Financial strain on family caregivers

In addition to the need to provide a raft of services on top of their job responsibilities, many family caregivers are financially strained as a result. Almost 80 percent of family caregivers report paying out-of-pocket costs, spending an average of $7,242 — or 26% of their income — per year, an AARP analysis found.

The financial strain was worse for minority communities with Hispanic/Latino caregivers spending 47% and African American spending 34% of their income.

What about paid caregiving?

Among family caregivers whose relatives do not live in a nursing home or assisted living facility, only about 31 percent have any paid help with caregiving. One major reason for that, as reflected in the AARP study we referenced already, is that paid care services tend to be expensive and often are not covered by Medicare.

For example, while Medicare covers certain skilled nursing care, it does not cover things like homemaker services or personal care, tasks that often fall to family members, and hiring others for these services can add up. 

Of course, nursing home (i.e. skilled nursing facility) stays are the most expensive type of long-term care, according to an analysis by Genworth, clocking in at nearly $100,000 a year for a semi-private room, but even less expensive services can be cost-prohibitive. Take, for example, the average time spent per week providing care services for family members (24 hours). Hiring paid caregivers to handle those services for a year would cost about $28,000, according to Genworth’s data. And in some states, the cost runs even higher — more than $40,000 in Colorado, Minnesota, and Washington.

But even when families can afford to pay for this type of care, it is often in too short a supply to make a difference. For example, a Maine program that pays for in-home aides for low-income seniors has a waiting list that’s months or even years long.

Considering all nursing care workers, including registered nurses, nurse practitioners, licensed practical and vocational nurses, nursing assistants, and home health and personal care aides, families in states like Florida, Hawaii, and Nevada are most likely to have trouble finding workers to help provide care to their loved ones, while those in D.C., New York, and Minnesota have the highest proportion of these professionals relative to the older adult population, according to our analysis of data from the U.S. Bureau of Labor Statistics and U.S. Census Bureau.

Tips to help families manage caregiving

With the share of older Americans rising every year, it is likely that more and more families will be faced with the dilemma of how to provide the care people need to live their lives with dignity. Here are some tips and resources to help.

Support services

• National Family Caregiver Support Program: A national program that provides grants to states to fund support services that help keep older adults in their homes as long as possible. Check out your family’s eligibility.
• Eldercare Locator: A public service provided by the U.S. Administration on Aging to connect families with services for older adults. Visit their website or call 1-800-677-1116 to speak with a specialist.
• Family Caregiver Alliance: A nonprofit dedicated to providing services to family caregivers of people with physical and cognitive impairments, including care planning and services, wellness programs, respite services, and more.
   

Family caregiving tips

Even in the best of times, caring for an aging loved one can be incredibly stressful. Here are some tips to help family caregivers cope.

• Build a community with other caregivers: We know that millions of Americans are providing unpaid care services for loved ones. That means you are far from alone, and other caregivers are an important resource for helping you adjust and receive support.
• Take care of yourself: You won’t be of any use to your loved one if you fall apart physically or mentally. So that means taking time for yourself and ensuring that your body and mind are as healthy as they can be, including looking out for signs of depression or burnout.
• Stay organized: It’s likely you’ll need to speak with doctors and other care providers on behalf of your loved one. Make sure you have all the documents you need, including power of attorney if necessary. Write down the medications your loved one takes and document any procedures they undergo.
• Ask for help and be specific: Most people want to help their friends and family in every way they can, but few people know what needs to be done. If you have had offers of help from people in your circle, determine what tasks they would be up for doing and assign them the job. Laundry, grocery shopping, cooking, or rides can all be spread around to willing helpers.
• Consider respite care: Respite care can provide short-term care to give primary caretakers a break, or time to attend to other important concerns. Some senior communities offer short-term stays where seniors can get assisted living help while their families are away or occupied (these are a great way to “try out” senior living, too). Additionally, there are organizations that provide respite grants, to help offset the cost of these temporary services.
• Take advantage of technology: There are smart home devices that can make it simpler (and less invasive) to keep an eye on elderly loved ones and keep them safer at home. Moreover, services like UberEats, Instacart, and other delivery services can take important errands off your hands and put time back in your schedule. Gogo Grandparent helps seniors use smartphone apps, like Lyft or Uber, without a smartphone. There are also apps specifically designed to help caregivers keep track of tasks and important information.
• Consult cultural organizations: Sometimes families find it difficult to provide the care their loved ones require, but also have a hard time accepting outside help. This might be due to family preferences or cultural perceptions of caregiving. If you're family is struggling with a bit of culture clash about who should and can provide care for elderly loved ones, know that you are not alone: this is a conversation many families must navigate. Local community centers or religious organizations might be able to provide you with resources as well as guidance.
• Investigate your state's Medicare offerings: Some states, like California, offer program's like Medi-Cal's In-Home Supportive Services. This program can help you pay for necessary care in your own home, like housekeeping, meal prep, laundry, and personal care like help with bathing and grooming.

Conclusion

Family caregiving has risen rapidly over the past several years, and as the share of older Americans keeps rising, there is no reason to think this trend won’t continue. While there is hope that our government will enact reforms to ease the burden, caregivers should know that they are not alone and can seek help and support.   

Works Consulted

Administration for Community Living. “How Much Care Will You Need?” Last modified on February 18, 2020. https://acl.gov/ltc/basic-needs/how-much-care-will-you-need.

National Alliance for Caregiving (NAC) and AARP. “Caregiving in the U.S. 2020.” May 2020. https://www.caregiving.org/wp-content/uploads/2020/05/Full-Report-Caregiving-in-the-United-States-2020.pdf.

United States Census Bureau. American Community Survey, Multigenerational Households. Accessed February 2022. https://data.census.gov/cedsci/table?q=multigenerational&g=0100000US%240400000&tid=ACSDT1Y2019.B11017.

Elliot, David. “How Build Back Better supports caregiving and why it urgently matters.” December 14, 2021. https://www.chn.org/voices/how-build-back-better-supports-caregiving-and-why-it-urgently-matters/.

Jesse Archer, Wendy Reiboldt, Maria Claver, John Fay. “Caregiving in Quarantine: Evaluating the Impact of the Covid-19 Pandemic on Adult Child Informal Caregivers of a Parent.” January 23, 2021. https://journals.sagepub.com/doi/10.1177/2333721421990150.

Haomiao Jia, Rebecca J. Guerin John P. Barile, Andrea H. Okun, Lela McKnight-Eily, Stephen J. Blumberg, Rashid Njai, William W. Thompson. “National and State Trends in Anxiety and Depression Severity Scores Among Adults During the COVID-19 Pandemic — United States, 2020–2021.” October 8, 2021. https://www.cdc.gov/mmwr/volumes/70/wr/mm7040e3.htm#T1_down.

AARP. “AARP Research Shows Family Caregivers Face Significant Financial Strain, Spend on Average $7,242 Each Year.” Jun 29, 2021. https://press.aarp.org/2021-6-29-AARP-Research-Shows-Family-Caregivers-Face-Significant-Financial-Strain,-Spend-on-Average-7,242-Each-Year.

Genworth. “Cost of Care Survey.” 2021. https://www.genworth.com/aging-and-you/finances/cost-of-care.html.

Galewitz, Phil. “With Workers In Short Supply, Seniors Often Wait Months For Home Health Care.” June 30, 2021. https://www.npr.org/sections/health-shots/2021/06/30/1010328071/with-workers-in-short-supply-seniors-often-wait-months-for-home-health-care.