|FEATURE | spring 2007
Visionary caregivers are tranforming life for the elderly and disabled
When I first met Cathy Butler, she had a full day ahead of her. She was on her way to the art studio to frame her photographs for an upcoming show. Then she had to spend time on the computer, followed by dinner with a friend. She wouldn’t have time to talk with me until evening.
Sounds unexceptional—except that the physically disabled Butler lives in a nursing home. Nonetheless, she radiates contentment. “Two years ago, I woke up every morning asking myself, ‘What will become of me?’” she says. “Now I wake up trying to decide which of the people I love here I’ll get to see today.”
Butler, at 64 one of the youngest residents of Seattle’s Providence Mount St. Vincent (“The Mount”), is benefiting from a new generation of long-term care—one that refuses to view disabled and older people as being “too far gone” to have lives of meaning and joy. Visionaries around the nation are transforming the culture of nursing homes such as The Mount from an institutional model to one reflecting values of community, independence and empowerment for residents and staff alike.
The new philosophy is based on “nurturing the human spirit,” says Charlene Boyd, administrator of The Mount and president of the Pioneer Network, an organization dedicated to changing the culture of aging (www.pioneernetwork.net). “It’s … a model of care where residents can have a maximum freedom of choice, built on flexible, natural connections where bonds can be formed between resident and caregiver.”
Such efforts are timely: Baby boomers are not only caring for their aging parents, but uneasily looking ahead to their own futures. The MetLife Mature Market Institute projects that half of U.S. adults will need some kind of long-term care, and in many ways this is a women’s issue. Seventy-two percent of nursing-home residents are women, and 90 percent of direct-care workers are women. Moreover, 61 percent of family caregivers are women.
These stakeholders—nursing-home residents, staff and family members— are discovering that formerly hospital-like institutions can be recreated as genuine homes. Although each of these transformed places is unique, they share some fundamental values:
They restore autonomy to residents.
Traditional nursing homes dictate a monotonous schedule of, say, breakfast at 8, supper at 5, bingo on Wednesdays and sing-alongs on Fridays. At The Mount, though, Butler gets up when she pleases, then chooses to eat at a sit-down restaurant, sunny cafeteria, espresso bar or homey kitchen. Deli sandwiches, ice cream, chips and fruit are always available. “We encourage residents to eat well,” says Noel Petitjean, former director of nursing at The Mount, “but it’s their choice. If they were still living at home, they would eat what they want. This is their home.”
They empower the aides.
Resident-directed care liberates staff as well as residents. As “resident assistant” Marsha Wilson at The Mount explains, “Residents here tell you what they want. It makes it a lot easier, because you don’t have the nurses forcing you to force residents to do what they don’t want to do.”
Aides like Wilson, who provide close to 90 percent of direct care in nursing homes, typically are given little respect; friction between aides and nurse supervisors is endemic. Nationally, turnover in nursing homes averages 70 percent per year for aides and 50 percent for nurses, making it impossible for staff to form strong, long-term relationships with residents. Transformative homes throw out the hierarchy: Self-directed work teams do their own scheduling and are given opportunities—skills training, serving as mentors or being reimbursed for tuition—to advance their careers. As a result, turnover drops.
They enrich the environment.
The Mount replaced its nurses’ stations and old hospital wings with “neighborhoods,” each with its own kitchen and dining room. Children visit on-site day-care centers, and often lunch with elders. At The Mount, I encountered two men in wheelchairs with youngsters on the carpet at their feet, all engrossed in a storybook read by an aide. Dogs visit and cats wander at will. Art, music and house-plants proliferate.
They create community.
Transformative homes allow residents and staff to truly show affection and concern for one another. At homes I visited, hugging and joking were common. Everyone was encouraged to contribute to the household as best she or he could. A group of very old women sat around a kitchen table hulling strawberries at The Mount. Residents there volunteered to help staff learn English or read to other residents.
Also, barriers between nursing homes and the outside world are coming down. Residents ride the Ferris wheel at the county fair, fish at a lake or bet on the ponies. One transformative home sponsored a local Little League team: The elders cheered at games and hosted an awards ceremony inside the nursing home at season’s end. Another welcomed the community theater to use the home’s auditorium.
The more these places look and feel like home and community, the more engaged residents are, including those with dementia. They can still enjoy listening to favorite music, stroking a cat, smelling baked cookies or viewing a tree in spring.
Surprisingly, most of these homes do not cost more to operate, and a significant number of residents— in some cases a majority—are on Medicaid. In contrast, poor and impersonal care is expensive: Nursing researcher Marilyn Rantz found that high-quality care actually costs $13.50 less per patient per day. Transformative homes reduce costly staff turnover, food waste and the use of incontinence products and medication. At the same time, revenues rise as rooms stay full with satisfied residents.
Nevertheless, these nursing homes remain few and far between. The Pioneer Network estimates that perhaps several thousand of the nation’s 17,000 nursing homes are beginning to change their institutional culture, but fewer than 200 have truly transformed. Why not? Radical change requires hard work and committed leadership. This may be especially challenging in the two-thirds of U.S. nursing homes owned by for-profit companies, many of them corporate chains. In this climate, reformers are moving beyond ethical appeals and arguing the business case for change.
State and federal regulators could help by shifting from a punitive approach that documents failure to one that creates incentives for improvement. As University of Minnesota Professor Rosalie A. Kane wrote of regulatory efforts, “Absence of bed-sores, absence of depression, absence of malnutrition—these are hardly evidence of a good quality of life or goals to inspire generations of care providers.”
The public can play a role by demanding a better quality of life for all elders. “This movement is touching people in a very deep way,” says Rose Marie Fagan, co-founder of the Pioneer Network. “Maybe old age won’t be so dreaded when we create a role for elders in our society—where we’ll be valued for our wisdom and for what we’ve contributed.”
Beth Baker is a freelance writer in Takoma Park, Md. She is the author of Old Age in a New Age: The Promise of Transformative Nursing Homes (Vanderbilt University Press, 2007).