Alzheimer's research is advancing so rapidly that scientists expect to understand the cause of the disease within the next five years. But that's still in the future. Alzheimer's patients have already lost much of their past.
Family Health West, a small nonprofit nursing home in western Colorado, tries to re-create the past (or something as close to it as possible) in order to bring back pleasant, long-distant memories. Its "Main Street" turns conventional Alzheimer's therapy on its head. And the results have been surprisingly good.
Patients need fewer anti-psychotic drugs. Falls have decreased. Families visit more often. And the concept is making other Alzheimer's care facilities sit up and take notice.
Family Health West, located in Fruita, eight miles west of Grand Junction, has tapped a growing market. Ten percent of the U.S. population over age 65 has diagnosable Alzheimer's. That number rises to 25 percent in the over-80 population and 50 percent among those between the ages of 85 and 90. As the baby-boomer generation ages, the number of Americans with Alzheimer's disease is expected to rise from today's 4 million to 14 million in 2030.
An estimated 70 percent of Americans with Alzheimer's are cared for at home. But the disease is a difficult one to comprehend and to live with: Alzheimer's patients often remain physically hardy but tend to wander, can undergo severe personality changes and sometimes become uncooperative or even combative.
"When people come here [to place a patient], they come in worn out and desperate. They'll say, 'I promised I would never put Mom in a nursing home,'" says chief operating officer Errol Snider. "But here they come in feeling they didn't bring Mom to a place where she's going to die."
"Main Street" is actually the third floor of a nursing home, designed to look like anything but. Former bedrooms were gutted and redesigned to resemble a small-town downtown, circa 1950, with a general store, post office, ice cream parlor and barber shop. Crawford, the low-key resident dog, greets visitors at the elevator and takes walks outdoors with patients and their nursing assistants. Plastic flowers fill window boxes up and down the hallway. The small "movie theater"--which doubles as a chapel on Sundays--houses a wide-screen TV, real cinema seats and a framed poster from It's a Wonderful Life.
"Anything you can do to create a familiar setting is beneficial," explains Paul Bell, a psychology professor at Colorado State University who specializes in Alzheimer's research and is familiar with Main Street's novel concept. "Any kind of reminiscence works very well with people with Alzheimer's."
Staff members designed each detail with a double purpose. The "park" area contains a fountain (the soothing sound of bubbling water) and park benches (a visual cue to patients, who often pace relentlessly, to sit down and rest). Alzheimer's patients, who are often nocturnal, can wander into the ice cream parlor at any hour for soft-serve yogurt; cookies are baked throughout the day to fill the room with a pleasant, homey smell. Staffers say that the big-band music piped into the eating area actually stimulates the appetites of patients, who are typically poor eaters and prone to unhealthy weight loss.
Life on Main Street is brightly lit and active. Certified nursing assistants--here they're called "resident specialists"--don't just give baths and empty bedpans. Each is assigned to a seven-member "family" of residents and leads activities such as polka-dancing, gospel-singing, manicures or watching all-star wrestling on TV (an in-house favorite). Well aware of the statewide shortage of CNAs, Snider had planned to rotate staff out of the Alzheimer's unit every six months to prevent burnout, but he's found that most Main Street workers don't want to leave.
Although more and more Colorado facilities are adopting the "family" care model for Alzheimer's patients, Bell says the Main Street concept is still unique. The idea was hatched during a January 1997 brainstorming session among administrators. "We had empty nursing-home beds [for people with physical infirmities] but a waiting list for our Alzheimer's unit," explains Snider. Main Street "was uncharted ground. But we had nothing to lose.
"Everything in the literature says you don't want to stimulate Alzheimer's patients, because they can become combative, confused," he adds. But the Family Health West staff noted that occasional bus trips to a nearby lake for cookouts and walks seemed to calm and rejuvenate the residents. Alzheimer's patients must be kept in a secure unit because they tend to stray, but Main Street would give them something to do behind locked doors. "I would be agitated if I were doing nothing, and I think that's why they were agitated," Snider says.
Main Street serves a low-income group; 80 percent of residents are on Medicaid. "We built this baby on a shoestring," says Snider. Staffers went into the community to secure donations of lumber, discounted furniture and other odds and ends. The facility's maintenance staff did the remodeling and painting. CEO Dennis Ficklin, a skilled draftsman and carpenter, built the Main Street storefronts on weekends in his own garage. The entire effort, from concept to completion, took five months.
The result is something far less grim than what is found in most nursing homes, says Elizabeth Kelsey of Ridgway. Each week she makes the 100-mile drive to Fruita to see her 75-year-old husband, a former M.D. She became alarmed at his severe memory loss and paranoia four years ago. "He forgot how to do things that he used to know how to do," she says. "He could only focus on one thing at a time. His behavior changed so. I became the bad guy. When I took away the car keys from him, I really became the bad guy."
But going to Main Street is no trip to Disneyland. At times residents lose the ability to speak, or they greet visitors--even their own family members--with vacant stares. One woman, dressed in sweatpants and a prim blouse, spits out a string of obscenities until a staffer hugs and calms her. "It's interesting to see how the parts of the mind work," says Shirley Parmele, a social worker and program coordinator for the unit. "They can't tell you they want a drink of water, but they can spell 'locomotive.'"
Alzheimer's is only one of several diseases causing dementia, defined as the loss of intellectual functions such as thinking, remembering and reasoning. Huntington's disease, Pick's disease, Creutzfeldt-Jakob disease, Parkinson's disease and multi-infarct dementia, caused by multiple strokes in the brain, can also produce dementia.
Once a general community hospital, Family Health West realized in the 1980s that the advent of high-tech medicine and less-indulgent insurance companies was cutting into its patient base, so it started converting more beds to long-term care for the elderly. Today the 47 residents of Main Street range in age from 65 to 102, with most in their 70s and 80s. Many come from western Colorado and eastern Utah or have grown children in the area who moved their parents here from other states so they can check in more often.
The upbeat atmosphere of Main Street has made it easier for children and grandchildren to drop by. "Some families never miss a day," Snider says. "Other families can't emotionally deal with it. In general, it can be a pretty depressing situation." But now visitors don't have to sit in a dreary bedroom; they can stroll to the ice cream parlor, play with the dog or sit together on a park bench. "All the Alzheimer's patient has is now," Snider explains. "Sometimes when you get a smile from an Alzheimer's resident, that's as good as it gets."
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In its eighteen-month life span, Main Street has been honored by the El Pomar Foundation and the Colorado Department of Public Health and now fields three to four inquiries a week from other nursing homes wanting details. The unit plans to more than double its beds with a 10,000-square-foot addition opening in spring 2000. The $1.8 million project will include a secure courtyard so residents can spend time outdoors or work on waist-high gardening plots. In the meantime, social worker Parmele is planning another revolutionary touch on Main Street: busy holiday decorations, complete with colored lights.
According to the Rocky Mountain chapter of the Alzheimer's Association, an estimated 50,000 Coloradans have Alzheimer's --enough to fill Coors Field. Despite rapid advances in understanding the disease, scientists don't expect any immediate cure.
But the Main Street concept could help. "Of course, there are some patients who won't recognize Main Street," says CSU's Bell. The big-band tunes won't evoke long-term memories in everyone; the next round of Alzheimer's patients will have grown up with shopping malls and rock music. "For the next generation," he says, "you'd have to pipe in the Beatles or Simon and Garfunkel."
To view a promotional video clip for the Main Street Experience, visit www.westword.com.