WATERVILLE – When Vicki Dyer became the program administrator for the newly opened 32-bed dementia ward at Lakewood nursing home in 2006, she wasn’t happy with the amount of suffering she saw.
As in many nursing homes, residents who were disoriented, frightened and frustrated by their inability to recognize people or their surroundings and became difficult to handle were medicated as a way of calming them down.
It’s a situation that frequently plays out in nursing homes, which care for some of the 25,000 Maine residents who have been diagnosed with Alzheimer’s disease. When residents express themselves by frequent crying, or pushing away well-meaning caregivers, or even simply by wandering around to explore their surroundings, the response over the past few decades has sometimes been to stifle that behavior by medicating the resident into a stupor.
“We need a better approach,” Dyer recalled saying.
Nursing home residents with dementia are “vulnerable to us,” she said recently. “They’re at our mercy.”
Today, the nursing home has eliminated antipsychotic drugs from its dementia ward.
That move has made it a national health care model.
National health care leaders have been working to prevent the overmedication of seniors since 2005, when a report from the Food and Drug Administration showed they may have a lower quality of life and even die from some antipsychotic medications, which can cause heart failure and pneumonia.
JAKE AND PAULINE
Jake Ellis married his high school sweetheart, Pauline, in the early 1940s, when they were just 17 years old.
Jake, whose given name is Gerald, worked for most of his life as a plant manager, while fun-loving Pauline raised their five children.
The favored remedy for an ill-behaved child back then was to “give them a slap on the ass and set them on the chair,” she said.
Jake said his wife always made the time to do the cooking, the canning, and everything else.
It wasn’t always a fairy-tale romance, he said, but a good, solid marriage that lasted through the decades.
“It weren’t easy, but we got along,” he said. “We got by. We had our hard times, but we had our good times, too.”
But when they were living in Dexter, with the children grown, Alzheimer’s struck, removing some of the luster from their golden years.
It could have been Jake. As it turned out, it was Pauline.
Or perhaps it would be more accurate to say that the frightening disease afflicted them both.
Pauline began wandering. Jake was increasingly worried about her slipping off and getting lost or hurt without him realizing it.
Desperate, Jake asked Pauline’s doctor for advice. The doctor recommended Seroquel, a mood-stabilizing medication. According to the FDA, Seroquel’s possible side effects include weakness, risk of suicidal thoughts and actions, abdominal pain and an increased risk of stroke, which can lead to death in elderly people with dementia. Because of the increased risk of death, the FDA specifically warns against using the drug to treat elderly people with dementia.
The medication didn’t help Jake and Pauline. He locked the doors, but she unlocked them. He began sticking a butter knife into the gap between the door and the doorjamb, to make it harder for her to get the door open. Sometimes, she tried to get out the window.
“I really couldn’t handle her,” he said. “She’d get up in the middle of the night, like, and she’d get outside and wander down the driveway, and I found her in the snow, barefooted. We lived right beside the lake. It was really scary.”
TREATING WITHOUT DRUGS
When Jake took Pauline to Lakewood, he didn’t realize it, but Dyer’s campaign to reduce patient medication was in full swing.
Dyer was familiar with Seroquel.
“There are more adverse side effects from those medications than there are benefits,” Dyer said. “Seroquel has a tendency to make the elderly combative.”
During her years of experience as a licensed practical nurse, Dyer said, she realized that her patients acted up because of what was going on around them rather than because of an inner compulsion.
More than 90 percent of the time, dementia patients respond positively to changes in their surroundings, she said.
“It’s just a need that they have that’s not being met,” she said. “Rather than give them the pill, we have to figure out what the need was and eliminate the need for the pill.”
At Lakewood, the emphasis is on a soothing environment. Staff members are chosen for their calm demeanor and passion. Three chickens are in residence in a coop in the courtyard, part of the therapy program. The common rooms hold comfortable furniture, cats and entertainment options. Residents can get out of bed on their own schedule rather than being hurried through a regimented daily routine.
“If we want to have food, we have food,” Dyer said. “If we want to have a party, we have a party.”
When Pauline first came to Lakewood, she was frequently agitated. She could rarely sit down and be at peace and instead often took things off of shelves or put everything in sight onto her bed. Her wandering continued. One day, she found an unlocked window and tried to escape through it.
“I can’t remember why I did it,” she said. She does remember how she felt, though. “Aggravated.”
Jake, who faithfully made daily visits, said there was a moment in the beginning of each day when he lost hope for the hours ahead.
“I could walk in and just look at her and say, ‘It’s going to be a bad day for me today,”‘ he said.
After a couple of months at Lakewood, Dyer started reducing Pauline’s Seroquel dosages. Over a period of weeks, it was eliminated.
Today, Pauline sits easily and chats with the people around her. Some memories are lost to her, but many remain. She goes for rides in the community with Jake. She enjoys singing and dancing and other organized activities. She shops in Lakewood’s gift store and looks forward to occasional group trips to the coast.
Jake said he feels like his wife’s true personality, which he described as “jolly and fun-loving,” has returned.
These days he enters her room with an air of pleasant expectation.
“Now, when I come in, she’s smiling, waiting for me,” he said.
RATES IN CENTRAL MAINE
In 2011, the federal Office of the Inspector General for the Department of Health and Human Services published a report that found 22 percent of antipsychotic prescriptions to seniors were in violation of federal standards on nursing home drug prescriptions.
Last year, the Centers for Medicare and Medicaid Services, which oversees those federal medical programs, responded by asking nursing home prescribers to reduce prescription rates by 15 percent.
“The nation is catching up with us,” said Cathy McKay, Lakewood’s director of nursing.
Nationwide, almost 23 percent of long-term nursing home residents were on at least one antipsychotic medication in 2012, according to the Medicaid and Medicare centers. Maine’s statewide rate is close to that at almost 25 percent.
The Medicaid and Medicare centers recommend consumers ask nursing homes about how they manage the behavior of residents.
“Interventions that do not require medications, such as higher staffing ratios, many and varied activities, and consistent assignment, have been shown to be successful in many cases,” according to the Medicaid and Medicare centers.
In a sampling of 19 nursing homes in central Maine, some have much higher rates of antipsychotic drug prescriptions than others, according to data from the Medicaid and Medicare centers. The numbers refer to the number of overall patients, not just those in dementia wards.
Five nursing homes are above the state average, including MaineGeneral Rehab and Nursing at Glenridge in Augusta, at which 32.5 percent of seniors are on antipsychotics; Sanfield Rehab & Living Center in Hartland, 30.5 percent; Woodlawn Rehab in Skowhegan, 29.9 percent; Pittsfield Rehab in Pittsfield, 26.8 percent; and Maine Veterans Home in Augusta, 25.3 percent.
On the other end of the spectrum are Orchard Park Living and Rehab in Farmington, which has the lowest rate of antipsychotic use at 2.9 percent; Lakewood, with 7.9 percent; Somerset Rehabilitation in Bingham, with 8.5 percent; Edgewood Rehab in Farmington, with 10.3 percent; and Winthrop Manor in Winthrop, with 10.6 percent.
While overmedicating seniors is a problem, sometimes a prescription is the best answer to a difficult situation.
Sometimes medication is the only way to reduce anxiety and keep both staff and patients safe, said Connie McDonald, administrative director for MaineGeneral’s nursing homes.
“They might be very combative when someone is trying to keep them clean, and the medication can help them not to feel so anxious and frightened,” McDonald said. “People do need to be cleaned, and staff have to have some assurance that no one will get seriously injured.”
Still, McDonald said, the organization, like most in the country, is addressing the issue of overmedicating residents.
The data from the Medicaid and Medicare centers show one of MaineGeneral’s nursing homes, Glenridge, topping the list at 32.5 percent, but McDonald said the percentage, which includes aggregate data for the last eight months of 2012, doesn’t accurately reflect a significant trend of reduction of antipsychotics there.
At the beginning of 2012, 46.9 percent of Glenridge’s 125 patients were on antipsychotics, but by the end of 2012, the number had dropped to 16 percent, where it remains today, she said.
“We really did a lot of work on that,” she said.
She also said that antipsychotics might be needed more at Glenridge, where all of the patients have moderate to severe dementia, than at a nursing home with a mixed population of dementia patients and others.
Both McDonald and Dyer stressed the importance of education in reducing antipsychotic prescriptions at a time when families and health care workers have come to expect that the answers to their problems lie in medication.
Dyer said that doctors often respond to pressure from nurses and family members who are desperate to stop unwanted behavior.
All three groups can gain a better understanding of when antipsychotics are called for, she said. Lakewood achieves its success by talking candidly with families and doctors in an effort to try an environmental approach to resident care.
Staff members undergo sensitivity training, in which they wear Vaseline-smeared glasses, headphones playing both music and television programming, rubber gloves with some fingers taped together, and corn kernels in their shoes. They are then taken into a dimly lit room and told to brush their teeth, fold towels, put on a particular sweater, write a letter to the family and pour a drink of water and drink it.
They come out of the exercise with a new understanding of the people they’re caring for, Dyer said.
While there are some patients who do need antipsychotics, she said, the need is tiny compared to the number who receive them. Of the hundreds of patients who have gone through Lakewood’s dementia ward, she said, only a very few have needed psychoactive drugs.
Pauline, for one, has a more positive outlook on the workers who care for her at Lakewood — and on life — now that she’s off medication.
“When you’ve got friends and other people that take care of you, you know it’s going to be better,” she said.
Matt Hongoltz-Hetling can be contacted at 861-9287 or at: