Caring For The Carers

8.25.2020

Nearly four years after her longtime partner’s death, Michelle Murphy still wakes at night in a panic, imagining that she forgot to help him breathe.

At 61, Jeffrey Senne was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. Murphy had become his main financial support and caregiver in their woodsy Northern California home, and ended up devoting 11 years to looking after him. As the disease progressed, Senne, who Murphy says once looked like Harrison Ford, grew bald and frail, lost control of his bowels and could no longer speak or swallow. To prevent him from suffocating, she’d have to wake up at least every two hours to suction the saliva pooling in his mouth.

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“I was terrified that he’d die on my watch,” she says.

Hypervigilance often comes with the job for the more than 17.7 million Americans, by conservative estimates, who care for older and disabled family members. So does stress, anxiety and long-term harm to the caregivers’ physical and financial health. In recent years, the work of caregiving has been lasting longer and becoming more complicated — and as America’s population rapidly ages and becomes more disabled, many more of us will be taking it on. Although state and local governments have begun to try to lighten the burden, they could and should be doing much more, experts say.

“Many people know there’s a reasonably high possibility they’ll occupy this job at some point, but they have no idea how profoundly it will affect their lives,” says Richard Schulz, a psychiatrist at the University of Pittsburgh and a national expert on family caregiving. In a recent article in the Annual Review of Psychology, Schulz and four colleagues reviewed the research on family caregiving for the disabled and ill elderly, outlining the enormous toll on caregivers and potential ways to help them. “Our health system has always been narrowly focused on the care recipient,” Schulz says. “We have to expand that to include the caregiver, who needs and deserves a lot more support.”

Hidden heroes

Caregivers like Murphy take on many tasks: shopping and housework; helping with bathing, dressing and monitoring medicines; managing outside care; making financial decisions; and navigating the fragmented health care system to find quality, affordable extra care. Increasingly, they’re also providing the kinds of sophisticated medical support once delivered mainly by trained and licensed professionals, such as cleaning wounds and dealing with feeding and drainage tubes and catheters, because many insurance plans do not cover such care.

At the start, many caregivers enjoy an emotional boost as they help improve someone’s life. But as time goes by and the care recipient’s health deteriorates, the work becomes harder and drearier. And the more that the caregiver feels the role is involuntary, the more vulnerable he or she is to depression.

A review of 151 studies of caregivers’ health found changes in several biological markers of stress, including higher levels of the stress hormone cortisol and C-reactive protein, a marker of harmful chronic inflammation. The study also found caregivers showed impaired immune function and worsened cognitive performance. Spouses caring for partners with dementia also showed heightened risk of heart disease. Caregiving can even shorten lifespans: When researchers followed a group of 392 men and women aged 66 to 96 who were caring for their elderly spouses, they found the carers were 63 percent more likely to die over the next four years than a similar group not providing such care.

Money worries often add to the burden, especially for women, who make up 60 percent of family caregivers, usually during the peak of their earning power. Nearly half of caregivers who take time off work report reduced income due to fewer hours, missed promotions and sometimes loss of jobs. On average, a woman aged 50 or older who leaves the workforce to care for an aging parent will lose more than $324,000 in wages and retirement savings.

Murphy, the founder of an executive coaching firm, is a dramatic example of the risk. While caring for her partner, she says, she used up all her savings so she could cut back on hours, pay for some outside caregiving and to set up what she called a “sub-acute hospital” in her home, complete with hospital bed, hydraulic lift to move her partner from bed to chair, nebulizer, suction pump, cough-assist machine and oxygen tanks. The financial toll has been so immense, Murphy says, that as of January this year she has been struggling to pay her rent and other basic living expenses.

“I’m one step away from bankruptcy,” she says. “If this could happen to me, it could happen to anyone.”

On their own

Caregivers like Murphy often say they feel neglected by policymakers, unrecognized by health systems and underappreciated by society — and Schulz and other experts agree that’s often true. The AARP Public Policy Institute titled its 2012 report on the plight of family caregivers “Home Alone.”

Even trained professionals can find themselves unprepared when they’re plunged into the caregiving role. Harvard psychiatrist Arthur Kleinman spent a decade caring for his wife, Joan, after she was diagnosed with early onset Alzheimer’s disease, but was frustrated by how little support the couple received from doctors or the health care system. “None of them knew how to talk to me about what I could expect as time went on,” he says. “It wasn’t intentional; they simply weren’t trained for any of that.”

CREDIT: PRESSMASTER / SHUTTERSTOCK

Where to find help

Caring for an elderly relative or friend can be hard, stressful work. Here are just a few of the hundreds of organizations dedicated to lightening the load.

  • More than 600 local Area Agencies on Aging provide free or low-cost basic services, including nutrition counseling, home-delivered meals, caregiver training, insurance counseling, transportation and day care. Some AAAs also help direct families to financial support, including completing applications for Medicaid and veterans’ programs.
  • The AARP is a 38 million-strong membership organization that lobbies on behalf of people over 50 and offers a wide range of benefits, including discounts on car rentals and health and life insurance. Its website provides extensive information for family caregivers and a toll-free number for referrals for support.
  • The Family Caregiver Alliance provides services including legal and financial consultation, care-planning, education and referrals to other appropriate support groups. Its Family Care Navigator page is an especially useful tool to help caregivers find their way through the maze of state and local programs offering services, advice and financial aid.

Katherine Ellison

Making things easier for caregivers would go a long way toward helping care recipients, Schulz says, given how often overstressed caregivers take out their frustration on their wards. While physical mistreatment is rare, verbal and psychological abuse is not. In one study of 265 pairs of caregivers and ill or disabled elderly care recipients, more than one in five of the recipients reported “negative verbal interactions” such as screaming, yelling, insulting and swearing. The abuse was more likely when recipients had greater needs and when the caregivers themselves were elderly, cognitively impaired, in poor physical health or at risk for depression.

Kleinman, Schulz and other caregiving experts say that other developed nations, including Germany, Japan and the Scandinavian countries, do a significantly better job than the United States in supporting family caregivers. A 2007 study by the AARP Public Policy Institute found that Germany’s universal health benefits protect families from the kinds of out-of-pocket expenses that can be catastrophic for Americans. Germany’s family caregivers can also count on a lot more direct support than those in the United States, including up to four weeks of respite per year and social security credits that protect future pensions.

Germany, Norway, Sweden and several other industrialized countries even pay family members to be caregivers, which the US will do only once the family is sufficiently impoverished to qualify for Medicaid.

Planning for the tsunami

In the United States, the long-predicted “silver tsunami” now gathering force makes it all the more urgent to ramp up meaningful support for family caregivers.

By 2030, 72.8 million US residents — more than one in five — will be 65 or older, with rapid growth in the number of the “oldest old”: those over 80, who are most in need of care. Yet even as this wave builds, the number of potential caregivers is declining as fewer people have children, more couples divorce and more women join the workforce.

To cope with this oncoming crisis, Schulz says that health care and social service providers must begin by systematically identifying and vetting family caregivers: listing them in the patients’ electronic records, assessing their abilities and making sure they understand the tasks they’re taking on. Only then can the health system start to take meaningful steps to help them.

Fortunately, many state governments have been moving forward on this front. In recent years, 40 states have passed the CARE Act (for “Caregiver Advise, Record, Enable”), requiring hospitals to identify and register a caregiver every time an older person is discharged, and to provide instruction to that caregiver about the medical tasks he or she will need to handle at home. The law marks a significant shift from the previous (and often erroneous) assumption that elderly patients were in charge of their own care.

The next step for many family caregivers is to search for local support programs and financial aid, which often leaves them spinning wheels in what Schulz calls “a completely disorganized system, where you’ll find different levels of support wherever you look.” Some states, for instance, provide payments to caregivers through Medicaid, while others don’t. And among the ones that do, some — including Alaska and Arkansas — specifically won’t cover spouses or legal guardians in that role. If the caregivers are fortunate, the care recipient will have a long-term insurance policy that pays them for their time (not all do). Under some conditions, the Department of Veterans Affairs also will train and pay family members who are living with and caring for elderly veterans.

Throughout the country, more than 600 Area Agencies on Aging — state-designated and government-funded public and private non-profit organizations — assist older people who wish to remain in their homes. These agencies typically offer services including adult day care, subsidized meals and transportation. Increasingly, they also support caregivers with stress-relief programs that have been shown to be effective in studies, including physical activity, cognitive behavioral therapy and meditation, as well as respite care — backup support so that caregivers can take breaks.

While all of these techniques can be helpful, Schulz says that the most effective approach is to provide a comprehensive program offering caregivers skill-building workshops, stress-relief options and regular, direct communication with health experts online, by phone or in person.

A leading example of this is a program known as REACH (Resources for Enhancing Alzheimer’s Caregiver Health), which began in 1995 in six US cities as a research effort sponsored by the National Institute on Aging. Over the years, studies have shown that its broad approach, later modified to become REACH II, improves the emotional and physical well-being of people who care for loved ones with dementia. It also improves their skill at managing their loved ones’ stressful behaviors.

The REACH II method has now been adopted by several US states, as well as the Veterans Administration, the Indian Health Service and internationally, in China, South Korea and Germany, Schulz says. While that signifies some progress, he points out that no comprehensive program for caregivers has yet been formally integrated into the health system on a national level.

Any future support for caregivers won’t be enough to help Michelle Murphy, though. Last December, she was diagnosed with stage 3 leukemia. At 68, with no children of her own and no immediate family able to help her, she says she wonders who, if anyone, will step up to care for her when she needs it.

10.1146/knowable-082420-1

Katherine Ellison is a journalist and author who recently spent five years caring for her aging parents.

This article originally appeared in Knowable Magazine, an independent journalistic endeavor from Annual Reviews. Sign up for the newsletter.

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