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鈥 stories.

鈥淭here鈥檚 really very little known about the experience of providing care from the perspective of the caregiver,鈥 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, 鈥渨e鈥檙e learning a lot that would otherwise be invisible.鈥

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. 鈥淚 want to be a champion for family caregivers of people with chronic illness and disability,鈥 she says.

“There鈥檚 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. 鈥淲hat happens when I get too old to care for her?鈥 one woman asked about her daughter, who has an intellectual disability. 鈥淢y biggest fear.鈥

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鈥檚 current role is one she鈥檚 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鈥檚 Hospital of the University of Pennsylvania and St. Mary鈥檚 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鈥檚 disease and related conditions. 鈥淎nd I鈥檝e been a family caregiver,鈥 she adds, noting that she helped care for her mother after she was diagnosed with Alzheimer鈥檚 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鈥檚 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鈥檚 retirement.) In 2015, Ellen and Kevin teamed up and obtained one of Boston College鈥檚 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. 鈥淔amily caregivers would call us and say, 鈥楳y veteran is not able to talk on the phone, but I want to talk,鈥欌澛爏ays 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. 鈥17.

These studies, particularly the latter, highlighted specific challenges family caregivers face. Several of Mahoney鈥檚 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, 鈥淓ach day you can say this is how the day is going to go, but that鈥檚 usually not how it goes.鈥 Dealing with paperwork required by supporting agencies is a grind too. 鈥淵ou just don鈥檛 get a break,鈥 one woman said. 鈥淚t keeps coming at you.鈥

“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鈥攚hen a child with a disability becomes an adult and is no longer eligible for services provided by local school systems, for instance鈥攃an be particularly challenging. 鈥淐aregivers say it鈥檚 like falling off a cliff,鈥 says Ellen. As one mother told her, 鈥淔amilies fall apart because they鈥檝e had school, they鈥檝e had aftercare, they鈥檝e been able to work. And then all of a sudden, the child turns 21 and there鈥檚 nothing. There鈥檚 this void.鈥

Sometimes life events that would normally be merely inconvenient can turn into nightmares. 鈥淲hat am I going to do with my husband?鈥 one woman asked. 鈥淚 need surgery and he can鈥檛 be alone.鈥 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,聽they said, that some lacked the knowledge to guide caregivers to community resources that might help address a patient鈥檚 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 鈥渉ighly stressful.鈥

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鈥 needs.

Mahoney continues to be inspired by her conversations with people who give so much of themselves to care for their loved ones. 鈥淐aregivers tell me that unless someone has been in that situation, it鈥檚 very difficult to know what the experience is really like,鈥 she says. 鈥淭hey 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.鈥 鈻

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