An experiment that began four years ago in Two Harbors, Minn., is winning praise from federal and state authorities as a breakthrough in reducing the use of antipsychotic medications among elderly nursing home clients, improving patient care and saving huge sums spent on unnecessary and potentially dangerous drugs.
The "Awakenings Initiative" was conceived by the Shoreview-based nursing care organization Ecumen and funded by a $3 million state grant in 2010. It relies on behavioral modification and creative manipulation of the patient's environment — and simply listening to elderly clients — to reduce anxiety and delirium and the need for medications.
Over the course of the initiative, Ecumen says, the use of antipsychotic medications among clients who didn't have a diagnosis of psychosis was slashed by 97 percent across its 15 nursing homes, saving $200,000 to $400,000 a month in Medicare and Medicaid spending.
It's also saving precious moments between loved ones.
Barbara Melby chose the memory care unit Ecumen Parmly LifePointes in Chisago City for her husband, Harlan, last year because it aims to avoid stupefying medications to control his unruly behavior. Harlan, 74, has suffered from Parkinson's disease for more than a decade and developed advanced dementia in the last two years. He had been taking trazodone and Xanax for severe anxiety, but they provided little relief; he wandered away more often and became more aggressive as he lost his ability to recognize her.
After he moved into the nursing home 14 months ago, the staff noticed that loud noises and busy activities made him fearful, so they provided a quieter place for him at the edge of activities and gradually reduced his meds. Melby said he now recognizes her at times.
"If he was highly medicated, those moments wouldn't be there, and those are the moments that I treasure," she said.
The three-year state grant has run out, but the program proved so successful that Ecumen says it's pushing it out to its assisted living facilities and likely will look to export it to home-based care in the future.
Ecumen's program has won plaudits from the Minnesota Department of Human Services, the federal Centers for Medicare & Medicaid Services (CMS) and Stratis Health, a Bloomington company that serves as the state's Medicare Quality Improvement Organization.
The need for innovation is pressing. As the number of Americans 65 and older grows, more will have Alzheimer's disease and other dementias. By 2025, the number of elderly people with Alzheimer's is predicted to reach 7.1 million — 40 percent more than the 5 million who are now affected nationwide.
Avoiding side effects
The genesis for the Awakenings Initiative was an advisory issued by the U.S. Food and Drug Administration in April 2005, warning that newer generation antipsychotic drugs such as Haldol, Seroquel, Zyprexa, Abilify and Risperdal carried an increased risk of death and other serious side effects among elderly patients with dementia. It required manufacturers to put a "black box" label on the drugs.
But the drugs continued in widespread use to control disruptive behaviors among dementia patients, prompting critics to say they were used primarily to make the patients manageable for caregivers. In 2011, the inspector general for the U.S. Health & Human Services Department issued a report that found heavy usage of the drugs among nursing home residents with dementia; 22 percent of the cases did not comply with federal standards. CMS set a goal of reducing use of the drugs by 15 percent.
Such use of the drugs has since declined nationally, and Minnesota has the 10th lowest usage rate in the country. The state eliminated their use in 333 nursing home patients in six months.
At the heart of the Awakening strategy is individualized care. Caregivers get to know the person with dementia and try to understand the prompts that set off problem behaviors, said Dr. Cheryl Phillips, senior vice president for public policy and advocacy of LeadingAge, which represents nonprofit agencies that work with the elderly.
She gave an example of one of her former patients, a woman in her 80s with severe dementia who tore at her hair and repeatedly banged her head, complaining of hearing dead babies in the room. A staff member eventually figured out that she was delusional and misinterpreted the squeaky wheels of a medicine cart as wailing babies.
"The answer for her wasn't medication. It was WD-40 on the wheels of the medicine cart," Phillips said.
Maria Reyes, who oversees training and management of the Awakenings programs, cited a similar case. She recalled a male patient who had a habit of urinating indiscriminately around the facility where he lived. The staff eventually learned that he'd lived on a farm and used an outhouse his whole life; he wasn't sure where to go at the nursing home. So they decorated the bathroom door to resemble an outhouse, and that solved the problem, Reyes said.
A cultural change
The Awakenings Program began in 2009 with Eva Lanigan, a nurse at Sunrise Home in Two Harbors, and Dr. Tracy Tomac, a neuropsychiatrist. Lanigan is now retired. Tomac works for Regions Hospital in St. Paul and as a consultant for Ecumen.
About 40 percent of dementia patients go through psychotic episodes, and most get agitated at times. Some may warrant the use of antipsychotics, Tomac said, but some may not. The question, she said, is whether the psychosis causes suffering for the patient. She said one woman had visual delusions that made her see the world as if it were through a window into a Cecil B. DeMille movie, but it did not cause her any distress, so it didn't require medication.
In cases where medicine is required, she said, the goal is to find the lowest effective dose.
"We don't want to say medications are bad. We want to talk about appropriate use," Tomac said.
Oftentimes, behavioral problems can be accommodated with creative adaptations. Tomac described the case of a male patient who wandered around the facility. Staff learned that he'd been an outdoorsman and liked to move about. So they set up a walking perimeter around the nursing home and marked a path with visual cues. That safely fulfilled his needs, Tomac said. Allowing for normal movement is important in the management of dementia and may actually lead to less wandering, Tomac said.
"Many times it's what we [caretakers] are doing that is causing the behavior," said Shelley Matthes, who oversees clinical quality at Ecumen. "That's what we had to drill into the staff. What are the antecedents?"
That approach required a cultural change within the nursing homes, Matthes said. "Part of the problem is, we are a medicine culture. We want a pill to fix everything."
Reyes recalled another client who came to Ecumen from a hospital "with a nice little cocktail of medication." The woman had initially gone to the hospital with a urinary tract infection. Such infections can cause people to become confused, Reyes said. She was given Haldol. She had trouble sleeping, so they gave her Ambien. Those drugs may have been appropriate during her stay at an acute care hospital, she said. But her confusion persisted at the nursing home.
Reyes said they gradually weaned her from the medications and after several months, she walked out of the memory care unit and returned home.
"I'd never seen that before," she said. "It was a classic case of delirium, which can have many causes. In her case, it was the medication."
Dr. Alvin Holm, medical director of Alzheimer's and memory loss care at Bethesda Hospital, said agitated behavior is a form of communication for dementia patients who can no longer connect with people appropriately because of their disorder.
"We would like to treat behavioral disturbances like we treat strep throat," Holm said. "But it doesn't work that way."
"Drug therapy is no substitute for environmental supports," Holm said. "If drug therapy was the answer we wouldn't need places like Ecumen. All patients would be at home on drugs."