America isn’t taking care of caregivers

48 million people provide unpaid care to their loved ones in the US. Here’s how to help them.

This story is part of The Aftermath, a Vox series about the collateral health effects of the Covid-19 pandemic in communities around the US. This series is supported in part by the NIHCM Foundation.

One evening in 2016, Sabrina Nichelle Scott checked in on her aging grandmother in New York City. She found Lillian, then in her early 90s, trying to cook meat that was still in its plastic packaging.

That was when Scott realized her grandmother’s advancing dementia required more care than visiting home health aides alone could provide. Scott left her job as a systems trainer for New York City Health + Hospitals and became her maternal grandmother’s primary caregiver. With help from multiple aides and other family members, Scott was able to ensure her grandmother was receiving the care she needed, while also carving out enough time to start her own consultancy.

That system worked okay for Scott, now 56 — until the pandemic hit.

Malcolm Jackson for Vox

Suddenly, much of the outside support became too risky, and Scott needed to provide round-the-clock care in her grandmother’s Harlem apartment. She helped Lillian with basic hygiene, prepared enticing meals to encourage her to continue eating (Scott herself subsisted mostly on oatmeal, grits, and sausages), and spent long, sleepless nights trying to ensure her grandmother didn’t leave the apartment and risk exposure to Covid-19. “From March through October of last year, I did not have a break,” Scott told Vox.

Dementia had not robbed Lillian of her fiercely independent spirit, but it had made her verbally and sometimes physically aggressive, and she would fight back against caregivers other than Scott. Whenever Scott undertook essential errands, she depended on her mother or an aide to stay with her grandmother briefly, so she “only went out under extreme, extreme reasons: I had to go to the laundromat, I had to get food. That’s it.” She had to stop working and even postponed a surgery she needed. It was a “very precarious situation,” she said.

An estimated 47.9 million adults in the United States — a staggering 19.3 percent — provide informal care to an adult with physical or mental health needs. This unpaid work, which includes everything from trips to the doctor to feeding, bathing, and toileting, has been valued at $470 billion per year, equivalent to three-quarters of the entire budget of Medicaid. Even in the best of times, the vast majority of this work is invisible and undersupported, leaving millions of caregivers struggling in silence. The Covid-19 pandemic pushed many caregivers into crisis.

And while Covid-19 vaccination has helped some Americans experience a joyful summer, a large number of caregivers are still at home, struggling with the fallout from ongoing isolation, anxiety, and lack of support.

Interviews with caregivers, researchers, and advocates, along with early data about the pandemic’s impact on this vast and diverse group, reveal widespread and alarming rates of anxiety, depression, and other mental health issues. They expose a national failure to support this vital part of our society — one that many of us will depend on at some point in life.

Tim Ryan Williams/Vox

Before the pandemic, Scott’s grandmother Lillian was social and stayed physically active, despite her advancing dementia. She played an important role in her church community and regularly exercised by walking the wide hallway in her apartment building.

The shutdown took those activities away. Dementia left Lillian unable to keep her mask on, so venturing out of the one-bedroom apartment, even to the elevator, was too risky for anything but an urgent medical reason. Within Lillian’s apartment building, “death was all around,” Scott said, recalling people going in and out in protective suits to reach sick or dying neighbors.

In the small apartment, Scott tried to replace her grandmother’s activities as best as she could: They sang gospel songs, and she moved the furniture so they could walk a little bit. But “the routine of ritual is so important,” Scott said, noting these disruptions to social connection and physical activity likely contributed to her grandmother’s decline.

Because of Lillian’s difficulty with masking, she also missed important medical care during the pandemic. Many times they were stopped at the door of a health care facility and turned away, Scott said. “Yes, there are rules, but certain populations cannot follow the rules,” she said, frustrated. “They should not be denied access to health care. … Access to medical resources is a human right.”

Scott struggled to explain her experience even to people who were close to her. Non-caregiver friends talked about pandemic “wellness walks.”

“That’s nice,” Scott said. “I did not have the leisure to go for a walk.” When her brother suggested that she take their grandmother outside, just to sit, Scott reminded him that Lillian could not keep her mask on for the elevator ride.

So they stayed inside, riding the waves of Lillian’s advancing dementia as best they could. “Some days she could dress herself, some days she could not. It ended in me in an apartment not being able to get out to get any fresh air,” Scott said. She remembered thinking: “Mentally, how do I adjust to confinement?”

Her rare breaks during those intense six months came in the middle of the night, sometimes at 2 am, when her grandmother was finally asleep. She used those moments, even during the hot Harlem summer, to take a bath with nice soaps she had splurged on before the pandemic.

Scott said she felt additional pressure, as a Black woman, to be an intensive caregiver. She had previously provided years of live-in caregiving for her paternal grandmother, who had dementia as well. When Scott eventually recommended more skilled care for each of her grandmothers, she says her family resisted — telling her, in effect, “We don’t do that.”

“We meaning Black people,” Scott told Vox.

Malcolm Jackson for Vox

Despite the hardships, Scott says she is grateful to have had the opportunity to care for her grandmother. “My grandmother always opened her doors to people in the family,” she said. Lillian was the person who took people in when they needed a place to stay. “I have no regrets … it was an honor to serve her.”

In March 2021, Lillian died at the age of 97.

Scott has since moved back to Jacksonville, Florida, where she has a house to herself and is working again. Still, she is recovering from the grueling stretch of caregiving and processing the loss of her grandmother. “I could be on a webinar or on the phone, and people don’t even know that tears are coming down my face,” she said. “I know I’m still traumatized from it.”

The Covid-19 pandemic undermined mental health on a massive scale, with anxiety or depression symptoms hitting one in three people in the US early in the outbreak.

Emerging data shows that it’s been especially difficult for informal caregivers. Two Centers for Disease Control and Prevention surveys last winter found that 40 percent of caregivers for adults reported anxiety or depression symptoms, and a worrying number — about 10 percent — reported serious suicidal ideation. These numbers were even higher early in the pandemic.

Among caregivers for adults who were also parents of young children, a staggering 50 percent said they had experienced serious suicidal thoughts. The authors warned of “an urgent need to tailor public health efforts for this population.”

Nearly half of family caregivers reported psychological distress in a different 2020 survey, and more than a quarter reported fatigue.

Another study found that early in the pandemic, “family caregivers reported higher anxiety, depression, fatigue, sleep disturbance … and increased financial worries,” compared to non-caregivers. Caregivers said the pandemic “increased the effort involved in providing care” and made it “more physically, emotionally, and financially difficult.”

“It’s scarring,” said Scott Beach, lead author of the study and director of survey research at the University of Pittsburgh’s Center for Social and Urban Research. Some caregivers may bounce back from mental health challenges as supports return, but others will likely continue to struggle with residual stress and worry, especially if the pandemic worsened the physical, cognitive, or emotional health of the person they were caring for.

Tim Ryan Williams/Vox

These early data points are only a glimpse of a worldwide problem affecting millions of people. “We’re going to see fallout from this for quite a long time,” said Amy Goyer, an AARP family caregiving expert who has also been a caregiver herself.

Before the pandemic, roughly 60 percent of informal caregivers had some form of paid employment, and the majority of those were working at least 40 hours a week. The pandemic forced a large number to start working from home — which meant juggling job and caregiving responsibilities simultaneously.

“For many of us, that’s our respite,” Goyer said of going to work. “That’s our break from caregiving. And now we’re at home constantly with our loved one.” Experts told Vox that, unlike the struggles of working parents, which were gradually acknowledged by the media, employers, and policymakers, the strain on adult caregivers was less widely recognized and supported.

Others had to leave the workforce altogether. Jessica Mills, 30, who lives in Augusta, Georgia, cares with her father for her 61-year-old mother, who has advanced, early-onset dementia. “She’s very active, so she has a lot of needs,” Mills said, and “within the past couple of years has just needed 24/7 care.”

About a decade before the pandemic, Mills dropped out of college and moved back home to help with her mother’s care. She worked part time at restaurants to bring in extra income.

But when the pandemic started, Mills quickly stopped working, to limit her family’s exposure to the coronavirus. That safety-based decision came with a huge trade-off: “All of a sudden you’re stuck, without the resources,” she said. She told Vox that because her home state of Georgia hasn’t expanded Medicaid, she didn’t have health insurance and was unable to afford therapy.

Caregivers who didn’t have the option to stop working outside the home often carried with them additional levels of anxiety. Many, disproportionately people of color, were already in jobs that put them on the front lines of the pandemic, such as in the service sector. People of color are also more likely to be in caregiving roles in the first place.

Tim Ryan Williams/Vox

Add to that the fact that many communities of color were hit the hardest by the coronavirus. Which meant, for many caregivers, “they’re dealing with higher rates of Covid-19 within their communities, still trying to juggle and balance caregiving, and often not having access to the same resources and supports,” said Christina Irving, the clinical services director at Family Caregiver Alliance in the Bay Area.

Black Americans are still less likely than white or Latinx people to have received at least one dose of the Covid-19 vaccine, leaving more people vulnerable to the virus. “So all these stressors coming at people from multiple angles has made it that much harder for them to manage,” Irving said.

For caregivers, isolation and worry were often a way of life even before Covid-19. “The things everybody feared and had difficulties with during the pandemic, we live that way,” said Jeanie Olinger, 60, who lives in Oklahoma City.

Olinger’s son Chris, who is 37, experienced a debilitating traumatic brain injury in a 2008 car crash. Since then, he has needed full care — from feeding to moving — around the clock. “He does nothing but look at me,” Olinger said.

In 2010, Chris was able to relocate from a care facility to his mother’s home, and she began working remotely and enlisting home health aides for Chris’s extensive needs. She was getting by.

But when the pandemic arrived last spring, “we didn’t let anybody in,” Olinger said. Like the majority of other people receiving care, her son — who has chronic asthma in addition to the brain injury — was at a higher risk of severe Covid-19 and death from the virus. That meant Olinger was on duty caring for her son, while also trying to work from home. “It was really difficult,” she said. For months, she stopped taking her usual stress-relieving runs and walks for fear of contracting Covid-19. Her one source of release was a punching bag in her garage. “When I was overwhelmed, I would go punch the snot out of that bag,” she said.

Joseph Rushmore for Vox

Joseph Rushmore for Vox

Joseph Rushmore for Vox

Caregivers like Olinger stopped seeing family and friends outside their household, and lost other forms of support as well. “Before, you could get your cousin to come over for four hours on Saturday so you could go see a movie, just to escape it and recharge your batteries,” said John Schall, CEO of Caregiver Action Network, a support and education nonprofit, and a caregiver himself. During the pandemic, “that kind of respite, those breaks, haven’t existed.”

Pandemic caregivers were additionally burdened with bearing witness as their loved ones slid precipitously toward poorer health. “The lack of social interaction and lack of physical activity really, really affected so many,” Goyer said. “Their loved ones got worse so much faster.”

Care recipients got “less socialization, less stimulation, less exercise and ability to be out in the world,” Irving said. This leads to more cognitive decline as well as loss of mobility and physical health, she noted. “That’s a huge strain on caregivers.”

The pandemic also prevented some caregivers from accompanying their loved ones — even those with severe cognitive, memory, or communication issues — into medical facilities. Megan Powell, 38, cares for her husband Jesse, 36, who has PTSD and traumatic brain injuries from four tours with the US Army in Afghanistan. She has long been his “caregiver slash advocate” at medical appointments, she told Vox, but she was shut out when the pandemic began. She tried to call in to appointments using speakerphone, worrying that because he has memory issues, important information was getting lost.

Lizzie Chen for Vox

Lizzie Chen for Vox

Terri Harvath, the founding director of the Family Caregiving Institute at the University of California Davis, said that her older partner was hospitalized in March 2020 for cancer-related complications. “She was delirious from surgery, she was frightened, she had a tracheostomy so she couldn’t talk, she couldn’t indicate what she needed,” Harvath said. Harvath was able to pull strings to be in the hospital, but for three weeks, she was only allowed to leave her partner’s room for one daily trip to the cafeteria.

Caregivers have also struggled with doubt and distress about bringing their loved one to the ER or hospital in the first place, not just because of potential Covid-19 exposure but also the risk of separation due to pandemic restrictions. In her clinic, Harvath worked with one caregiver who thought her mom might be having a stroke but initially thought twice about taking her to the ER because she knew it would mean leaving her at the door.

Informal caregivers are “the invisible member of the interdisciplinary health care team — they’re absolutely essential,” Harvath said.

In August 2020, Olinger’s son, whose traumatic brain injury left him unable to communicate, became very ill and needed to be hospitalized. “It was just terrifying,” Olinger said. After her son received a positive pneumonia diagnosis and a negative Covid-19 test, Olinger was allowed to stay with him. But if he had tested positive for Covid-19 and needed isolation, she said, she would have brought him home — even to die — rather than leaving him alone at the hospital without a caregiver.

Joseph Rushmore for Vox

For those who could use them, telehealth appointments brought minor and routine care to a growing number of people. But these virtual consultations could not replace important medical interventions and procedures. And “for others who don’t have easy access to technology, or can’t afford the devices or the monthly internet and broadband costs, it just put one more barrier for them being able to access services and supports,” Irving said.

Even as vaccines and lower Covid-19 rates have made it easier to access medical care in many places, missed care is likely to have lasting impacts. “For people who have chronic health conditions, for older adults, they may not bounce back in the same way that somebody who’s healthier would,” Irving added. “So we are going to see a bigger impact even as we start to come out of Covid-19.”

It’s not only the health of care recipients that has been at stake: Caregivers have had a hard time getting health care, too. This is a challenge even during normal times, when, as Goyer put it, “the biggest challenge they have is taking care of themselves.” And regular health care is especially important for this group: More than 40 percent of informal caregivers reported having two or more chronic diseases.

If the primary caregiver is unwell — or has a health crisis — that puts the care recipient at substantially higher risk for poorer health and death.

These sorts of worries wracked Mills while she and her father took care of her mother in Georgia. Mills got very sick with Covid-19 last spring, leaving her then-65-year-old father, in the same house, as the sole caregiver to her mother for weeks on end. “If me and my dad had gotten sick [and] were in bed for weeks, she wouldn’t be able to take care of herself,” Mills said of her mom. “It’s just so scary to think about.”

The mental health of caregivers can also have serious effects on the people they look after. Researchers have found over the years that conditions such as depression tend to lead to lower quality of care. A recent study in China, for example, discovered that stroke patients were more likely to die within six months of discharge from the hospital when their family caregivers experienced anxiety or depression.

For caregiving families, the pandemic restrictions and isolation could make home a pressure cooker. Powell, the caregiver for her Army veteran husband, describes herself as more of an emotional caregiver, because Jesse can keep up with most daily tasks. But his injuries have led to emotional volatility and, after the pandemic shut down his treatment facility, suicidal thoughts. Which put the whole family, including their 4-year-old son, on alert. “Things got really bad,” said Powell, who also experiences anxiety and depression.

Lizzie Chen for Vox

“There was a lot of anxiety throughout the entire house,” she said. “It’s not just the three of us. We have this thing in the house with us … the PTSD monster,” she said. “You don’t know what role it’s going to take in the day, but it’s going to have a role.”

Although she tried to shield their young son from the stress, it was often impossible. “There were a lot of days I would realize he was sucked into it,” she said. “We’re here, and we’re stuck, and we’re not going anywhere.”

The vast majority of people will need care at some point in their lives — and almost anyone can find themselves in the role of caregiver. Of the adults who are not currently caregivers, about one in six expect to become one within the next two years. And an aging population will need more care, with fewer young people to provide it. “The numbers are such that we have to do something to help people,” Harvath said.

An even greater share of this burden will likely be shouldered at home. After the alarming number of deaths from Covid-19 in long-term care institutions, “many families will be reluctant going forward to use those facilities, and we’ll bear an even greater brunt of care — even when it becomes really, really difficult to do so,” Harvath said. And much of this unpaid work will likely be done by people who have not been trained, supported, or adequately cared for themselves.

Some experts and caregivers see the pandemic as an opportunity to increase awareness about these struggles. “My hope is that one of the things that happens is that we use this disruption to all of our lives to make change,” Harvath said.

Before Covid-19, the US was lagging behind other countries in its support for informal, home-based care. Catching up would be a first step toward helping caregivers recover — for example, through tax credits, an expansion of federal family leave policies, and direct pay to informal caregivers.

The Credit for Caring Act, introduced in Congress this spring, would give eligible family caregivers up to $5,000 per year to help pay for care costs. The Biden administration has proposed up to 12 weeks of annual paid family leave that would cover caregivers like the ones in this story, through the American Families Plan.

But other plans have already fallen by the wayside. For example, Biden’s American Jobs Plan proposed $400 billion for additional Medicaid funds to help ease some caregiving burdens, but it was cut from the bipartisan infrastructure bill currently under discussion in Congress.

Harvath also cautions that programs should reach not only low-income caregivers but all families that could use help with care. “Caregivers who are in those middle-income brackets have very few resources,” she said. “They don’t have the resources to pay for care, and they don’t have eligibility” for assistance. Some families choose to spend down their savings just to qualify for essential services they could not otherwise afford.

A handful of states have invested more resources into support of this critical unpaid workforce. In 2018, Hawaii piloted a program making caregivers who also have paid jobs eligible for financial assistance for care expenses, with the aim of helping them stay in the workforce — and of saving the state and taxpayers money on outlays for otherwise more expensive care. The same year, Washington state also launched a pilot program to provide a monthly stipend for services to caregivers who don’t quite qualify for Medicaid benefits. This helps the caregivers and recipients, while saving the state money. Washington is set to evaluate the program at the end of this year, and if it’s deemed successful, it could be replicated in other states.

But policymakers can’t help caregivers unless they can locate them in the first place — which can be more difficult than it sounds. “Most people don’t use that term to describe themselves,” said Jennifer Olsen, executive director of the Rosalynn Carter Institute for Caregivers. “If you ask them, they would say, ‘I’m the sister,’ ‘I’m the daughter.’” And it’s not a status doctors typically discuss or screen for — despite the stakes — as they might for family medical histories.

Irving advocates for a more comprehensive connection of services among health care, social service, and government systems. “It doesn’t mean they’re going to provide all the supports — just so that caregivers don’t fall through the cracks.”

Joseph Rushmore for Vox

The US can’t afford to neglect caregivers. There is neither the budget nor the professional labor force to replace them. “If all of us family caregivers went on strike tomorrow — not that we would ever do that to our loved ones — but if we did, there’s no way the nation could ever fill this gap,” Schall said.

Scott, who trained as a business anthropologist and who now works as a home care consultant, believes that caregivers should receive guaranteed coverage for physical and mental health care: “How can you take care of someone else if you’re not healthy?”

Simply raising awareness is a first step, Scott added. “There will be more and more people who need caregivers,” she said, whether or not we like to think about it. “We’re all aging.”

Scott sees financial support for informal caregivers as a huge opportunity to keep care recipients out of much more expensive, tax-funded care. She would like to see this on a national level, rather than a patchwork of state and local programs that provide uneven coverage. And now is the time for these changes, she said: “Why not be preventative, like preventative medicine, as opposed to waiting until later?”

Caregiving may be a labor of love, but it’s still labor. We need to care for the caregivers, not least because helping them helps everyone else. “There’s an obligation,” Scott said. “Caregivers extend lives.”

CREDITS
Editors: Eliza Barclay, Daniel A. Gross, Julia Rubin
Visuals editor: Kainaz Amaria
Copy editors: Tanya Pai, Tim Williams
Fact-checker: Becca Laurie