Coping with Serious Illness in America

The luckiest among us have family and friends to lean on when times get tough. For those who develop a serious illness — an often painful and tumultuous experience — family and friends offer crucial emotional support and help with day-to-day activities. A recent survey of the sickest adults in America, conducted by the Harvard T. H. Chan School of Public Health, the New York Times, and the Commonwealth Fund, found that seriously ill adults also rely on their family and friends to organize their health care, helping them navigate an often complex, confusing, and inefficient system.

Focus groups and in-depth interviews conducted by the Commonwealth Fund since 2016 revealed that while taking care of a seriously ill family member or friend can bring meaning and satisfaction to caregivers, it also can become a complex and serious responsibility that burdens them.

Below we describe the many functions caregivers — defined as family and friends who provide care to the seriously ill — serve, as well as the financial, physical, and emotional challenges they face. We offer policy solutions, such as financial protections, employment flexibility, and training to prepare an “invisible workforce” for this deeply meaningful but sometimes overwhelming role.

Any one of us could find ourselves in the role of caregiver if we haven’t already. And our country and economy are likely to benefit when we help ensure caregivers are able to maintain their mental and physical health and stay in the workforce.

Many Caregivers Say They “Do Everything” for a Family Member or Friend with Serious Illness

Approximately 40 million Americans provide 37 billion hours of care and help each year to family members and friends. Most of the people with serious illness we surveyed (86%) reported that in recent years family and friends helped them deal with their medical or health condition at home.

Illness can make the simple activities of daily living, like cooking, cleaning, and bathing, nearly impossible, especially without assistance. Caregivers reported that helping with these routine tasks can become a huge commitment, and that the demand for care can escalate unexpectedly. “It started out as doing his laundry, getting groceries, but [my uncle’s] problems continued to get worse,” one caregiver explained. “There was really no other family in the area and now basically I do everything for him. I take him to his appointments. I cook his meals. When I leave him it almost feels like I’m leaving a child alone. It’s very scary.”

Even when a nurse or aide provides in-home help to the sick family member or friend, caregivers still need to organize the logistics of care, from scheduling doctors’ visits to taking time off work to provide transportation to the appointments and participate in the visits. Among people with serious illness we surveyed, more than half (55%) reported bringing a family member or friend to every medical appointment they had in recent years.

Our survey respondents also reported that they often relied on their family or friends who were health professionals (34%) for health care advice. These caregivers take on a number of important responsibilities for family members and friends with serious illness, such as helping to find qualified doctors, talking directly to the supervising clinician, and arranging appointments.

The Benefits and Tolls of Caregiving

People who care for a seriously ill family member or friend can benefit psychologically, emotionally, and socially from the experience. Previous studies have found caregiving increases self-confidence, makes caregivers feel closer to their ill family member or friend, and gives them the peace of mind that their family member or friend is well cared for. A daughter who cared for her mother with cancer described the fulfillment it brought her: “It meant a lot that I was able to be there for the person that was always there for me — who raised me and sacrificed for me.”

Despite the fulfillment caregiving can bring, it also can be incredibly burdensome and disruptive. The seriously ill adults we surveyed worry about the challenges their caregivers face. One seriously ill adult we spoke with said the following about her children: “Not only for my sake, but for the sake of my kids and my grandkids, I hope they are able to enjoy their later years and not worry about having to take care of me. I know they’d be glad to do it, but it has an impact on their lives, both short and long term.”

One-third (36%) of the seriously ill we surveyed reported that caregiving created problems for their family member or friend. These include emotional, physical, and financial strains.

Emotional strain

About one in three (31%) seriously ill adults in our survey reported their caregivers experienced emotional stress from caring for them. This is consistent with other studies that find caregivers experience significantly more stress than noncaregivers and have mental health issues like depression at twice the national rate. Caregivers who lack support from friends and family themselves are particularly affected by mental health issues and emotional strain.

Physical health issues

A quarter (25%) of the seriously ill adults we surveyed reported that their family or friend caregiver experienced physical strain from having to bathe, dress, and even lift them, to name a few issues. Other studies have shown just how powerful the physical toll of caregiving can be. Caregivers, compared to noncaregivers, are twice as likely to report chronic conditions like heart disease or diabetes and are more likely to view their health as fair or poor. These physical consequences seem to be in part because of caregivers having limited time and resources to spend on their own health. They also may engage in unhealthy behaviors like drinking, eating poorly, and postponing their own doctors’ visits.

Financial problems

Nearly one in four (23%) seriously ill adults reported their caregiver experienced financial problems because of caregiving. Moreover, more than half (57%) of the seriously ill adults we surveyed said the costs of their medical care were a direct burden to their family. As seriously ill adults themselves face financial strain because of their condition, family members and friends may be left to pick up unpaid medical bills. Beyond paying directly for medical care, a study by AARP found that family caregivers spend on average close to $7,000 a year taking care of their family member, or about 20 percent of their annual income.

Employment disruption

Compounding the financial burden, caregiving can get in the way of work; 15 percent of the seriously ill we surveyed said their caregivers lost or had to change jobs because of their caregiving responsibilities. A recent study found that nearly half of working caregivers said caregiving interfered with their job, and another 40 percent of those who were not working at the time of the study had quit their jobs or retired early because of caregiving. As one caregiver from our focus groups said, “My mother with Alzheimer’s lives with me. I manage all her affairs. I pretty much shut my life down to stop working and take care of her.” This need to drop out of the workforce is particularly concerning because the primary protection for working caregivers, the federal Family and Medical Leave Act (FMLA), offers only three months of unpaid leave. Moreover, it means the U.S. has fewer productive workers than it would if services were in place to support caregivers.

Support for “The Invisible Workforce”

There are several ways in which we as a nation could support this “invisible workforce” of caregivers — a group unseen, yet critical to the provision of care.

• Education, training, and mental health support. Education and training on effective caregiving could help to improve both caregiver and patient outcomes. A recent study found that reviewing how to take care of their family member or friend before discharge from an inpatient hospital stay lowered the cost of postdischarge care and reduced readmissions. In addition, mental health support from behavioral health providers and others could offset the emotional and physical challenges caregivers experience. For example, a managed care plan in New Jersey, Amerigroup, hosts caregiver events where they provide educational workshops on illnesses and offer relaxation exercises to help caregivers cope.

• Redesign health care for the seriously ill to make it less burdensome for patients and caregivers. Expanding the availability and affordability of respite care — which gives caregivers a temporary break — along with home care services, transportation, and care coordinators, would mean less responsibility for family and friends. AmeriHealth Caritas, for example, covers additional respite care beyond the state minimum to improve quality of life for enrollees and tackle caregiver burnout.

• Financial support. Policies requiring paid leave for those working and taking care of sick family could protect them from some financial consequences and help keep them in the workforce longer term. In addition, federal and state policymakers could offer tax benefits, provide direct compensation, or allow family and friend caregivers to claim Social Security benefits for the time they spend caring for the seriously ill to offset financial costs. Lastly, payers can directly compensate caregivers for their time. For example, Medicaid long-term-care plans offer payment to caregivers for direct care, but the specific benefits and criteria vary from state to state. Paying informal caregivers could even save the health care system money long term by preventing more costly care later on.

Caregiving in America is not easy for the friends and family who provide this undervalued, unpaid, and even unrecognized service for both the person with serious illness and our society. To keep family and friend caregivers healthy and in the workforce, health systems, payers, and policymakers could expand training, increase insurance coverage for home-based services, and implement policies to financially protect caregivers.