A woman, who was in her 90s, had lived for several years at the Ecumen Sunrise nursing home in Two Harbors, where the staff had grown accustomed to her grimaces and wordless cries.
She took a potent cocktail of three psychotropic drugs: Ativan for anxiety and the antipsychotic Risperdal to calm her, plus an antidepressant. In all the time she’d lived at Sunrise, she hadn’t spoken. It wasn’t clear whether she could recognize her children when they came to visit.
The Two Harbors home happened to be where Ecumen, which operates 16 nonprofit Minnesota nursing homes, was preparing an experiment to see if behavioral rather than pharmacological approaches could help wean residents off antipsychotic medications. They called it the Awakenings program.
"What’s people’s biggest fear? Being a ‘zombie’ in a nursing home," said Laurel Baxter, the Awakenings project manager.
Any visitor can see what she means. Even in quality nursing homes, some residents sit impassively in wheelchairs or nod off in front of televisions, apparently unable to interact with others or to summon much interest in their lives.
Nursing home reformers and regulators have long believed that this disengagement results in part from the overuse of psychotropic medication to quell the troublesome behaviors that can accompany dementia — yelling, wandering, aggression, resisting care.
For nearly 25 years, federal law has required that psychotropic drugs (which critics call "chemical restraints") be used only when necessary to ensure the safety of a resident or those around her.
The drugs can cause serious side effects. Since 2008, the Food and Drug Administration has required a so-called black box warnings on their packaging, cautioning that they pose an increased mortality risk for elderly patients.
Nevertheless, a national survey reported that in 2004 about a quarter of nursing home residents were receiving antipsychotic drugs. (Among the antipsychotic drugs most commonly used in nursing homes are Risperdal, Seroquel and Zyprexa.)
Though they may be prescribed less frequently following the F.D.A.’s warnings, these drugs are still overused in long-term care, said Dr. Mark Lachs, chief of geriatrics at Weill Cornell Medical College. And once the pills are prescribed, residents keep taking them. "They get perpetualized, like insulin," he told me, even though the behaviors they’re meant to soothe may wane anyway as dementia progresses.
"If a place is understaffed, if it takes particularly unruly patients, you can see how it happens," Dr. Lachs added. "Behavioral interventions are far more time-consuming than giving a pill."
Nevertheless, Ecumen’s Awakenings project emphasizes nondrug responses. "Medications have a place, but that shouldn’t be the first thing you try," said Eva Lanigan, director of nursing at the Two Harbors facility.
So the home trained its entire staff (housekeepers, cooks, dining room servers, everyone) in a variety of tools to calm and reassure its 55 residents: exercise, activities, music, massage, aromatherapy. It taught people the kind of conversation known as "redirecting" — listening to elders and responding to them without insisting on facts that those with dementia can’t absorb or won’t recall.
"The hands-on, caring part is the most important," Lanigan said. "Sometimes, people just want a hug. You sit and hold their hand."
At the same time, consulting with a geriatric psychiatrist and a pharmacist, the home began gradually reducing the doses of antipsychotics and antidepressants for patients whose families agreed. Among them: the woman with the mysterious cries.
As Dr. Lachs pointed out, behavioral interventions are labor-intensive. Two Harbors hired an additional nurse to oversee those efforts, and Lanigan was available to answer staff questions around the clock. Ecumen estimates that introducing the program to a 60-bed nursing home cost an additional $75,000 a year for two full-time employees.
The results startled even the believers, however. Every resident on antipsychotics (about 10) was able to stop taking them, and 30 to 50 percent of those taking antidepressants also did well without them. When drugs still seemed necessary, "we tried to reduce them to the lowest dose possible," Lanigan said.
Encouraged, Ecumen has introduced the Awakenings program to its 15 other nursing homes, using a $3.8 million, three-year grant from the state of Minnesota. "I believe we may learn that spending a little time now with a resident, preventing the use of psychiatric medications and their side effects, you’ll save time and money in the long run," said Baxter, the project manager. "I’m optimistic."
Of course, you can’t tell how well nondrug approaches work based on one facility’s outcomes. "We know how to reduce behavior problems and mood issues in controlled clinical trials," said Kimberly Van Haitsma, a senior research scientist at the Polisher Research Institute in Philadelphia."
"The actual nuts and bolts of how do you do this and keep it in place — over not weeks or months, but years — is a question the field is struggling with." Turnover among both staff and residents is high in nursing homes, she pointed out.
But with reduced medications, the woman at the Two Harbors home did seem to awaken. She was able to speak — haltingly and not always understandably, but enough to communicate. And what she let Lanigan know, after years of being virtually nonverbal, was that she was suffering physical pain, the cause of her crying out.
It took doctors a while to find effective medications for her nerve condition, but they were eventually able to make her more comfortable without further fogging her mind. She stopped taking psychotropic drugs altogether.
None of this can halt dementia; it’s a terminal disease, and it took this resident’s life last year. But in her final months, she smiled and played balloon volleyball with other residents and could say she felt fine or was hungry.
"She engaged more. Her family came to help her eat," Lanigan said. "It was a big change."