Currently, an estimated 44 million Americans provide unpaid care for a family member living with a chronic illness or disability. Over the past few years, Ellen Mahoney has spent many hours listening to these caregivers’ stories.

“There’s really very little known about the experience of providing care from the perspective of the caregiver,” says Mahoney, an associate professor at the Connell School of Nursing. Studies have quantified levels of psychological stress and other health problems that family caregivers experience, ranging from high blood pressure to diabetes. But Mahoney believes that the key to easing the critical burdens many caregivers live with can be found in their own words. By recording and analyzing their personal narratives, she says, “we’re learning a lot that would otherwise be invisible.”

Ellen Mahoney

Ellen Mahoney, photograph: Caitlin Cunningham

A respected scholar, Mahoney was the lead author of three interview-based studies that appeared in a special issue of the Journal of Gerontological Social Work published last March. Her research, and her ongoing work, focuses on family caregiving within the emerging and increasingly significant participant-directed (or self directed) alternative health care delivery and reimbursement system, which promotes personal choice and control over who provides services to people with disabilities who require long-term assistance but wish to remain in their own homes. (A participant-directed caregiver may be the patient, a family member, or a friend who makes decisions that help the patient continue to live independently.)

Mahoney believes that what she is learning applies to anyone who looks after the health and well-being of a loved one. “I want to be a champion for family caregivers of people with chronic illness and disability,” she says.

“There’s very little known about the experience of providing care from the perspective of the caregiver. ”
ellen mahoney, associate professor

Mahoney hopes to learn more about how daily experiences of family caregivers take a toll on their psyches. In interviews she conducted, caregivers opened up about their struggles to provide what is sometimes complex nursing care while also negotiating the bureaucracy of Medicaid and other assistance programs, she says. Many she interviewed expressed feeling socially isolated and forgotten, while others talked about their fear of the future. “What happens when I get too old to care for her?” one woman asked about her daughter, who has an intellectual disability. “My biggest fear.”

Mahoney hopes that her findings will eventually lead to changes in Medicaid and other public assistance programs that may lighten the load caregivers bear.

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Mahoney’s current role is one she’s well suited to take on: improving the lives of people with chronic illness and their family caregivers has long been the focus of her clinical work and scholarship. She spent years caring for people with chronic conditions in various settings, including Philadelphia’s Hospital of the University of Pennsylvania and St. Mary’s Hospital and Medical Center in San Francisco before she arrived at Boston College in 1987. In 2000, she co-authored Management of Challenging Behaviors in Dementia, a book about a critical issue facing caregivers of people with Alzheimer’s disease and related conditions. “And I’ve been a family caregiver,” she adds, noting that she helped care for her mother after she was diagnosed with Alzheimer’s disease.

It was a member of her own clan who led Mahoney to focus her work on family caregivers in participant-directed care settings. Her brother, Kevin Mahoney, professor emeritus at the Boston College School of Social Work, has been a leading figure in research on and development of participant-directed care since it was first tested in the United States in the mid-1990s.

Many in the disability community have championed the idea of a participant-directed alternative option, says Kevin Mahoney. Many have been frustrated by the way agency-based care was administered, with recipients often not knowing which aide might arrive to care for them, or when they will come each day. Some complained that the system was inf lexible and sometimes placed inconvenient restrictions on what aides can do in the home. In a real-life example, Kevin points to an aide assigned by an agency who was permitted to do laundry for a woman with severe multiple sclerosis, but not for her children.

Notes from family caregiver meeting

Participant-directed services were intended to give aid recipients more control, consistency, and f lexibility in how their care is delivered. Studies indicate that recipients of participant-directed services are significantly more satisfied with their care, have fewer unmet needs (ranging from getting help dressing to receiving medications), and even experience fewer health problems, such as falls and bedsores. The number of Americans taking part in self-directed care has nearly doubled in the last decade.

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In 2009, Kevin joined Ellen at BC, where he became founding director of the University’s Resource Center for Participant-Directed Services, which assisted state Medicaid programs and other agencies in setting up participant-directed plans. (The organization became a separate corporation, Applied Self-Direction, after Kevin’s retirement.) In 2015, Ellen and Kevin teamed up and obtained one of Boston College’s Research Across Disciplines and Schools grants to conduct an interviewbased study of military veterans in a participant-directed services program administered by the U.S. Department of Veterans Affairs. The resulting study, published in the Journal of Gerontological Social Work last year, showed that many vets said the care they received in participantdirected services vastly improved their lives.

But something unexpected happened while the study was underway. “Family caregivers would call us and say, ‘My veteran is not able to talk on the phone, but I want to talk,’” says Ellen. Ultimately, those phone calls inspired her to conduct two interview-based studies of family caregivers with Kevin and research fellow Aimee Milliken, Ph.D. ’17.

These studies, particularly the latter, highlighted specific challenges family caregivers face. Several of Mahoney’s interviewees pointed to unpredictability as a major problem. She spoke with a woman whose adult son with an intellectual disability was prone to screaming fits in public. Another caregiver told her, “Each day you can say this is how the day is going to go, but that’s usually not how it goes.” Dealing with paperwork required by supporting agencies is a grind too. “You just don’t get a break,” one woman said. “It keeps coming at you.”

“Caregivers say that being able to tell their stories, in a way that might make a difference to somebody else, is really powerful. ”
ellen mahoney, associate professor

Many interviewees noted that times of transition—when a child with a disability becomes an adult and is no longer eligible for services provided by local school systems, for instance—can be particularly challenging. “Caregivers say it’s like falling off a cliff,” says Ellen. As one mother told her, “Families fall apart because they’ve had school, they’ve had aftercare, they’ve been able to work. And then all of a sudden, the child turns 21 and there’s nothing. There’s this void.”

Sometimes life events that would normally be merely inconvenient can turn into nightmares. “What am I going to do with my husband?” one woman asked. “I need surgery and he can’t be alone.” Some caregivers spoke of the difficulty of finding reliable home health aides, or even someone skilled enough to fill in for a few hours when they need time off to relax or do errands. Other interviewees said their roles often left them feeling socially isolated. Yet some said that even when they receive support, it may be the wrong kind: for example, a man whose wife had a disability was referred to a support group for men whose wives were deceased. A number of family caregivers also cited high turnover and inadequate staff training among support coordinators at agencies that offered participant-directed services. They were concerned, they said, that some lacked the knowledge to guide caregivers to community resources that might help address a patient’s particular needs.

STATISTICS

2/3

of older Americans who need long-term assistance rely exclusively on family or friends.

66%

of family caregivers in the United States are women.

60%

of spouses who care for people with dementia become depressed, anxious, or both.

38%

of family caregivers call the experience “highly stressful.”

Sources: Family Caregiver Alliance, AARP, American Journal of Geriatric Psychiatry

For her part, Mahoney hopes to complete a new study of family caregivers based on interviews she recently conducted in collaboration with colleagues at Brandeis University. And, based on the qualitative data she has compiled from analysis of her interviews, Mahoney has begun to formulate ideas about what kinds of policy recommendations could improve the lives of caregivers in all settings. A good start, she suggests, might be requiring more comprehensive training for support counselors at health service agencies, which would allow them to be more responsive to caregivers’ needs.

Mahoney continues to be inspired by her conversations with people who give so much of themselves to care for their loved ones. “Caregivers tell me that unless someone has been in that situation, it’s very difficult to know what the experience is really like,” she says. “They say that being able to tell their stories to somebody who cares, in a way that might make a difference to somebody else, is really powerful.” ▪

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