Sept. 04, 2014
Behavioral disturbances such as apathy, physical or verbal aggression, and agitation are among the most challenging aspects of dementia and are likely to affect most patients at some point in the course of their illness. Immensely distressing to both patients and caregivers, negative behaviors greatly diminish quality of life and often lead to caregiver burnout, early institutionalization and acute hospitalizations.
Instead of psychotropic medications and hospitalizations — which more often harm than benefit patients — care models now emphasize prompt treatment of the organic, psychosocial and environmental factors contributing to challenging behaviors and symptom management using nonpharmacological interventions.
For nearly 20 years, the Mayo Clinic Dementia-Behavioral Assessment and Response Team (D-BART) has been practicing and promoting this patient-centered, multidisciplinary approach, which provides dignity and comfort for people with Alzheimer's disease and related disorders. For much of that time, neuropsychologist Glenn E. Smith, Ph.D., L.P., and psychiatrist Bruce Sutor, M.D., both at Mayo Clinic's campus in Rochester, Minnesota, comprised the team.
"The D-BART of today is the modern iteration of a program that began in the early 1990s when we recognized that dementia patients who were referred from long-term care facilities to our psychiatric wards were docile and pleasant when they were with us but exhibited challenging behaviors when they returned to their care facilities. What we realized then is that the problems didn't reside in the patients but in the setting," Dr. Smith explains.
Thus began the strategy of meeting patients where they are, literally and metaphorically, including evaluating both dementia symptoms and the psychosocial and environmental context in which they occur.
"About 75 percent of patients in nursing homes have a diagnosis of dementia but nothing more specific, so our first concern is to understand the type and etiology of dementia and to help patients, facilities and families understand that as well," Dr. Smith says. "Then we try to assess disease severity because we want to help institutions understand the great diversity that occurs in people with dementia. In those with mild cognitive impairment, agitation may reflect boredom and a need for stimulation, whereas people who are lower functioning may be overstimulated by, say, the noise and congestion of a dining room and need a quieter, more intimate environment."
Also crucial is a keen understanding of who the person was before cognitive impairment. Dr. Smith cites the example of a former power plant manager who was upsetting fellow diners by touching their plates and silverware. "He once had a very challenging job and was accustomed to being in charge, so we asked him to set out plates and silverware that weren't actually used and to write out operating procedures for setting the table. By knowing what he had done for a living and the kind of person he had been, we were able to give him back a sense of control and stop behavior that resulted from its loss."
The story also illustrates what Dr. Smith considers the most important dictum of dementia behavior management. "You can't create a behavioral vacuum," he says. "We are so often oriented toward what we don't want people to do that we end up trying to get them to do nothing. What we should be doing is finding positive activities that will compete with the behaviors we don't want to see. The key is finding when a person is most content and doing more of that — shifting the focus to what the person is doing when things are going well."
The D-BART approach has proved so successful it has been adopted by some care facilities in the region, which have gone on to create their own dementia behavioral teams. Since 2009, the Mayo team has also offered telemedicine consultations, mainly with patients, caregivers and facilities in rural areas with limited access to specialized mental health providers.
"We hope we are changing the model of care for facilities, and that in turn will increase the overall standard of care," Dr. Smith says, while acknowledging that the disproportionately high turnover rate among care facility staff is a counterweight to institutional reform.
Still, the D-BART interventions speak for themselves. One that has been especially successful is the creation of family surrogates for patients, most of whom do better when family members are present. Families are asked to write cards to the patient with encouraging messages. These are then photocopied and kept at the nurse's station to hand out to patients several times during the day. The same can be done with recordable greetings or videos — the aim is to maintain human connection with minimal staff time.
The Mayo team also advocates a three-step approach to redirection — joining patients in their reality to gain their confidence and trust and validating their concerns before trying to distract.
"We see again and again the iatrogenic agitation we create when we have 18-year-old caregivers telling adults they are wrong," Dr. Smith says. "Joining a patient in her reality can be hard for family members to embrace because it seems like deceit. But the disease has taken truth away, so we have to reframe the notion that the goal is truth. Instead, it should be engagement and contentment, and those are often the same."