Edge Runners. As part of its Raise the Voice campaign, in November 2006 the American Academy of Nursing (AAN) named Janet Specht and Meridean Maas as "Edge Runners"-nurses who identify new models of care that integrate the physical and mental health of patients and who make a "clear connection between research and practical solutions." Pat Ford-Rogner, chief executive officer of the AAN, says that the academy also honored these nurses for "the risk they took" in founding Liberty Country Living, an innovative long-term care facility for people with dementia, which opened in 1998 but was forced to close in 2003. (For more on the Raise the Voice campaign, see On the Road, page 36.)
As you get along in the disease process, you accept joy wherever you can find it," says Ann Bossen, MSN, RN, whose father had Alzheimer disease for 15 years before dying at the age of 86.
She's reflecting on his time at Liberty Country Living, an innovative long-term care facility in North Liberty, Iowa, for people with dementia, where Bossen's father had been living. He had previously been cared for at an assisted living facility with his wife of 54 years, but she was wheelchair bound and had grown increasingly distressed as her husband's condition worsened and he began to wander.
Bossen said her father's transition to Liberty Country Living was easy. The staff focused on things that interested him: he'd been a pharmacist, so they developed pharmacy ledgers and then asked his advice about prescriptions; he'd liked to golf, so they took him to a golf course to hit balls around. "He felt important," says Bossen. "His mood stabilized, he was calmer, and his weight came back up."
It didn't hurt that the kitchen and refrigerator at Liberty Country Living were open to the 14 residents and that the staff kept his favorite food, ice cream with chocolate syrup, always on hand.
Like home. Such details were no accident. Liberty Country Living was begun so that people with dementia "could have a more normal life and stay functional longer," says Janet Specht, PhD, RN, FAAN, who founded the facility with Meridean Maas, PhD, RN, FAAN. (Both are Bossen's colleagues at the University of Iowa College of Nursing in Iowa City.)
"I was director of nursing for many years at a large state facility," says Specht, "but I never thought I'd want my family members there." Even on special units in nursing homes, residents with dementia had "two 30-minute activities a day and meals. They were on lots of medication. Boredom was the central feature of their lives."
Specht points out that nursing homes in the United States "developed from a hospital model" rather than a "social model": long hallways, little common space, colorless environments, bland "steam-tray" food appearing from a mysterious source, and little interaction with staff-all of which contribute to the disorientation, anxiety, loneliness, incontinence, falls, and helplessness that mark patients with dementia.
Specht and Maas decided to start their own facility, using the best evidence-based practices and always keeping in mind the question: "How would we want things in our own homes?" They found a house in the country on five acres, with lots of trees. They received a grant from the Iowa Development Corporation but had to borrow an additional $350,000 to purchase and renovate the home.
A living room, readily accessible bathrooms always within sight, and an open "country" kitchen were high priorities. Residents could cook, clean, and garden to the extent they wanted. "If you can capitalize on people's long-term memories about how they grew up, it helps them to function better," says Specht.
There were lots of visitors, and staff members ate with residents at the table. The role of staff was "to promote interactions, since many people with dementia can't initiate a conversation." In a nursing home, she says, "some people withdraw, typically, while those acting out get all the attention."
A nurse manager led the staff and planned the care. The staff didn't consist solely of certified nursing assistants, but came from a variety of educational backgrounds, including art history, medicine, and psychology. All received extensive training in the care of patients with dementia.
Getting results. Specht and Maas tracked residents' functional ability and mental status, and the results they found were excellent: patients stayed ambulatory for an average of two years, retained social skills, had drastically reduced incontinence rates, had none of the typical weight loss associated with dementia, and used far fewer psychotropic medications than is typically seen.
Because Liberty Country Living didn't fit existing models of long-term care, reimbursement wasn't available. One goal was to show that such a small center could be cost-effective, but making a big profit was never a goal, says Specht, and by the third year they were able to offer profit sharing to employees, part of a successful effort at increasing employee satisfaction and retention.
The price of innovation? In 2003 new rules for dementiaspecific assisted living were put into effect in Iowa, requiring enclosed stairways and kitchens, as well as many other changes to meet strict fire codes designed for much larger facilities. Specht and Maas attempted to work with the concerned regulatory agencies, but in the time they were given the structural demands were impossible to meet. By then aware, says Specht, that they had been naive about building support for their project at the state level, they petitioned the legislature for a bill that would allow them to run Liberty Country Living for a period as a pilot or "demonstration" project. The bill was passed, but subsequently vetoed by Iowa governor Thomas Vilsack on the grounds that "it would place an Executive Branch regulatory agency in an advocacy role and [provide] state approval to programs that would otherwise be deemed unlicensed or uncertified." (His office did not return calls from AJN asking him to further explain his decision.)
So Maas and Specht closed Liberty Country Living in 2003, forcing the relocation of its residents. Bossen struggled to find a nearby nursing home with a dementia unit for men. In the new facility, her father had three bouts of pneumonia in two months; staffing levels were below those of Liberty Country Living, and the staff didn't know him "as a person."
At Liberty Country Living, she says, he could go outside to the fenced-in yard to watch the birds and fill the birdfeeders. He could "do the things done at home." But once people go into nursing homes, says Bossen, "they never see the outside of the place again." Her father stopped being able to express himself verbally or to feed himself, and he died within five months.
Reflecting on the closing of Liberty Country Living, Ford-Rogner poses a vital question: "Are we encouraging people to think how to transform the system-or are we putting up roadblocks?"
Jacob Molyneux, senior editor