Of the 5 million Americans now living with Alzheimer's disease, half of them are in its early stages. Many of these people exhibit memory loss but retain significant cognitive function. Their periodic battle cry of "I'm Still Here"— also the title of a book about compassionate Alzheimer's care — means that they have plenty of living left to do.
Culture Bus is a simple but powerful intervention that addresses what Alzheimer's patients can do, not what they cannot. The program began in 2002 in Chicago when participants in a successful support group at Northwestern's Cognitive Neurology and Alzheimer's Disease Center said they wanted more time together. "Why don't you get a bus and take us around the city?" one of the participants suggested to the center's administrators.
So clinical social worker Darby Morhardt, who then ran the support group, contacted the Council for Jewish Elderly, which owns buses, and formed a partnership. The program was an instant success.
"Culture Bus filled a huge gap in services to people with Alzheimer's disease," says Morhardt, who is now education director of the Northwestern Alzheimer's center.
The earliest field trips were excursions to museums. Smaller venues in Chicago, such as the DuSable Museum of African American History, Mexican Fine Arts Museum and Museum of Contemporary Art, were particularly successful. Museum visits sometimes reveal that people's memory of art and history can remain intact even after short-term memory is impaired. In other cases, "It's interesting to get their gut reactions [to modern art, for example] that depend entirely upon spontaneity," Morhardt says.
The expanded Culture Bus program, now run solely by the CJE, organizes trips, as well as programs — on Northwestern's Chicago campus and at a site in the northwest suburbs — that employ a full range of techniques connected to arts therapy.
"For any special population, the arts can often go deeper and further than many types of verbal expression," says CJE's Judy Holstein, who now coordinates Culture Bus. Among the most memorable programs, she describes a visit to a glass-blowing studio where each participant tried the technique and actually made an original paperweight. Many participants retained vivid memories of this outing, partly because glass-blowing is a unique sensory experience, but also because each person came home with a precious object that he or she created.
Another powerful field trip was to the National Vietnam Veterans Art Museum on the Near South Side of Chicago. The works of art include pieces inspired by combat and created by veterans. A few works prompted tearful reactions in some Alzheimer's patients, some of whom were military veterans themselves. "We don't try to avoid the full range of emotions," Holstein says. "What we want to do is make people feel whole."
Anyone involved in the Culture Bus program will note its effects. "Catching people in early and midstream Alzheimer's disease can help, and giving them an opportunity to learn increases self-esteem and confidence," Holstein notes. "We also believe that some people stabilize and slow down the progressive illness with this kind of stimulation."
Claims of slowing down the progression of Alzheimer's are anecdotal, perhaps more hopeful than scientific. But one thing is sure. "Everyone who has late-stage Alzheimer's disease was once in the early stage," says Marsel Mesulam, director of the Alzheimer's center. "The notion that there is nothing to be done for them is just wrong."— J.P.