After decades of dementia research, Laura Gitlin was still frustrated— and her dementia patients were still agitated. The applied sociologist and researcher was at Philadelphia's Thomas Jefferson University in 2009, working with a team of occupational therapists to create and test structured daily routines for dementia patients and their caregivers. The idea was to keep everyday activities such as waking, eating, grooming, and taking meds consistent and scheduled.
It helped. The patients got physically healthier, and their caregivers felt less burdened, too. Yet the routines didn't help with the patients' behavioral symptoms, which are among the hallmarks of the disease. Most common is agitation, which can manifest as pacing, walking aimlessly, rejecting care, seeming anxious, or repeating words and phrases. Physical or verbal aggression, apathy, depression, or even psychoses can occur, too, all of which can be emotionally exhausting and physically dangerous for both patients and caregivers. The usual treatment is pharmaceutical, but cholinesterase inhibitors, which may slow disease progression for some patients, only work for a short time and come with side effects like nausea, diarrhea, and vomiting.
Now a professor of community-public health in the School of Nursing, Gitlin is studying a new anti-agitation treatment: the Tailored Activity Program, or TAP. As in her previous studies, this program's occupational therapists prescribe a routine of activities for patient and caregiver to do together. The difference now is that the therapists design activities tailored to the patients' abilities, needs, and interests—activities the patients will enjoy, like games, music, and crafts. The goal is to use activity, rather than drugs, to keep patients calmer, safer, and more engaged.
With funding from the National Institute of Mental Health, Gitlin launched a pilot study to discover whether TAP would work for patients and their in-home family caregivers. Occupational therapists worked with 60 dementia patients to recommend specific activities and train their families. After four months, the patients were less agitated, more engaged, and seemed to enjoy their activities. Another bonus: Their caregivers could reduce their "on-duty" time by five hours per day.
After demonstrating that TAP could help at-home dementia patients, Gitlin wondered: Could it work for inpatients as well? Her first inpatient study launched in September 2012 at Johns Hopkins Bayview's Lakeside Medical Unit, a 33-bed short-stay unit for dementia patients whose behavior has become unmanageable for their usual caretakers. Twenty dementia patients were chosen for the TAP study; they all exhibited behaviors of extreme apathy, irritability, aggression, or agitation.
The OT staff tested cognitive and motor skills—and scheduled an hourlong interview with each patient's family. They then designed three activities per patient. Some played cards; others made beaded necklaces. Many played indoor golf. One patient's wife bought him a table hockey game, and another sang along to barbershop quartet music. Over three weeks and 10 activity sessions, the patients, family, and staff all saw and documented positive behavioral changes.
Why does it work? The activities "gave them a sense of dignity and purpose and meaning," theorizes Gitlin. She's still analyzing data, but the anecdotal evidence was enough that Lakeside Medical Unit is making TAP part of its daily dementia care routine.