Treating People, Not Just Symptoms
People with dementia flourish with person-centered care at local center.
By Peter Hansen
Clarice suffers from dementia. Along with the memory loss, cognitive impairments, and physical limitations the condition can bring, she's deaf and feels very isolated when she's in large groups.
When she first came to the Adult Day Center at Luther Manor in Wauwatosa in 2003, Clarice, in her late 70s, was also having problems with her psychotropic medication, prompting frequent emergency room visits and hospital stays.
To help her communicate, the staff gave her a writing board. "We gave ourselves a pat on the back," center Director Beth Meyer-Arnold recalls, "but she was still in these great big groups, and no one was spending individual time with her."
Unknown to the staff at the time, Clarice is an excellent cook ('very competent in the kitchen," Meyer-Arnold says), and now, two years after her first visit to Luther Manor, she's helping plan the center's menus and has become, in Meyer-Arnold's words, "a vital volunteer" in many center activities.
Clarice is happier now, quick to smile, and her daughter-a busy police sergeant who would often take Clarice to the hospital- recently told Meyer-Arnold, "I can't tell you what this has done for my life."
How did the staff at Luther Manor learn about and tap into Clarice's unique interests and talents? They used an important new tool for improving the lives of people with dementia: They asked her.
Involving people with dementia in decisions about how they're treated is part of an emerging model called person-centered care, in which caregivers address dementia sufferers' individual wants and needs, as well as their diagnoses and symptoms.
"The change is from the medical model of care, which approaches the patient as a set of diagnoses rather than a person," explains Lyn Geboy, who earned her Ph.D. in May from the UWM School of Architecture and Urban Planning.
In a unique university-community partnership, Meyer-Arnold and Geboy were research partners on the implementation of person-centered care at Luther Manor's Adult Day Center.
Under the old medical model, "You made decisions about daily activities and the plan for this person based on their safety, number one," Meyer-Arnold says. "Then you looked at the medical diagnoses, medication, medical orders.
"Now, when the decisions are made based on who this person is and how they want to participate, and what their abilities are, it flips things. It takes time, though. We're all trained in the other model."
Under the guidance of Professor Gerald Weisman-a pioneer in creating more supportive environments for older people-Geboy developed a person-centered care model that called for transforming three elements of the day center: the staff's behavior, the activities program, and the physical space.
Some staff members resigned after adoption of person-centered care, Meyer-Arnold says, citing their inability to adjust to the less-structured, less-routine environment. When the center's activity director left in 2004, instead of hiring a new person, Meyer-Arnold promoted three staff CNAs (certified nursing assistants) to newly created person-centered care specialist positions. They work together as a team, and gather information from the other staff about the "participants" (the word "patients," Geboy explains, evokes "that medical model thing").
"We don't have one person deciding what all the programs are going to be, and giving assignments to everybody," Meyer-Arnold says. "It's coming from the people."
By "people," she doesn't just mean staff. Program participants are also active planners, as Clarice's story shows.
Another example is Beatrice, a Catholic nun (her religious order doesn't offer dementia care) who leads a Bible study twice a week. After a lifetime of service and involvement, Beatrice was languishing at Luther Manor. But ever since her "partner"-a staff member assigned to learn more about her interests and background-discovered Beatrice's past teaching experience and work at family shelters, Beatrice has been "absolutely blossoming" with her new involvement, Meyer-Arnold says.
What makes Geboy's work (and Weisman's previous work) especially innovative is its inclusion of the physical environment, which Geboy says is "typically ignored" in addressing needs of the elderly.
In fact, this ambitious project that became Geboy's dissertation started out as a modest architectural problem. Where a row of bright windows now stands on the center's west side, a dark corridor once served as a low-sensory walkway, which was believed to have a calming effect on people with dementia. That belief has fallen out of favor, and the corridor had recently been used for storage.
Meyer-Arnold looked to the renowned UWM Institute on Aging and Environment for ideas about redesigning the space. When Geboy, then a fellow at the Institute, suggested expanding the project to include person-centered care principles, Meyer-Arnold enthusiastically agreed. It soon became apparent that the project would go beyond removing a wall.
"The systems approach sees place as consisting of people, program, and physical setting," Geboy explains. "So if you make changes to the physical setting, then you're going to have to recognize that changes are going to happen with the people and the program."
"Once we began to look at what happened in the space-what kind of interaction and what kind of engagement happened in the space," recalls Meyer-Arnold, who serves on the leadership council for the UWM Center on Age and Community, "we realized that we were really scrutinizing how we were all interacting with people with dementia. And that really needed to change."
What started as a modest $8,000 construction project became a complete $100,000 organizational change, made possible thanks to a grant from the Helen Bader Foundation, with additional support from the Stackner Family Foundation.
By the time the dust settled, the low-stimulation environment and the bland and structured snack time had given way to the Skylight Caf�, where participants can gather for conversation and order coffee and a snack at their leisure. Big tables were replaced by smaller, more intimate ones. The new, easy-to-clean caf� floor meant consumption of food and drink (and potential spilling) was no longer restricted to a limited area. In the main area, the large circle of chairs facing a single activity leader in the middle were replaced by small groups of chairs at right angles, so people could better see and hear each other in one-on-one conversations and small activity groups.
Coupled with the qualitative study that produced the architectural and organizational changes is the quantitative part, statistical analyses that show what Geboy calls "what's happening in these patterns of activities, these patterns of interactions."
"We can statistically show that there were improvements in quality of care," she says. "We can show that the behavior of the staff improved when we made these interim architectural changes and program changes."
"It was much bigger than any of us anticipated," Geboy says. Geboy credits Meyer-Arnold for her efforts and willingness to make the transformation to person-centered care. "What Beth has done here is totally on the vanguard," she says. But Meyer-Arnold is quick to praise Geboy as well.
"Lyn has developed this fabulous theory and a model, she says. "It seems so simple, but it really isn't. This is a tremendous tool. She could have consultation work for the next 20 years if she wanted it."
"Making the transformation from focusing on services to focusing on the people who come here every day is huge," Meyer-Arnold says. "The change to focusing on the person has to happen, because the baby boomers are demanding it."
