Nursing Homes Struggle To Kick Drug Habit

New Therapies Sought For Dementia Sufferers; Music and Massages
By LUCETTE LAGNADO December 20, 2007 WSJ

BROOKLYN, N.Y. -- It is lunchtime at Cobble Hill Health Center and Elizabeth Johnson is busy helping patients in the Alzheimer's unit -- tying plastic aprons around their waists, passing out salt and pepper shakers, paper cups, straws and little containers of milk.

"You have to sit and eat," Mrs. Johnson tells one resident. "There is a spoon if you need a spoon," she says to another.

In her print dress and coral lipstick, Mrs. Johnson, 71 years old, can almost pass for a staffer on some days, or even the manager she used to be at a local city hospital. In fact, she is a patient here, stricken with an advanced form of dementia that sometimes renders her confused, fretful -- even combative. Not long ago, Cobble Hill's staff would respond to Mrs. Johnson's unruly episodes by putting her on a powerful antipsychotic drug.

Use of a new generation of antipsychotic drugs to control the behavior of dementia patients has surged in recent years, despite the Food and Drug Administration's "black box" warning labels that these drugs can increase the risk of death for elderly dementia sufferers. About 30% of nursing-home residents are on antipsychotic drugs, according to the Centers for Medicare & Medicaid Services, most of them on newer ones called atypical antipsychotics.

Mrs. Johnson, however, is now part of an experiment at the Cobble Hill nursing home to wean patients off antipsychotics. In her case, the staff has figured out that when she becomes distraught, the best way to calm her down is to have her do what she loved to do when she was well: work. Simple tasks such as setting the table, they say, give Mrs. Johnson a renewed sense of purpose and calm.

The challenge of caring for rising numbers of seniors who suffer from dementia and the behavior problems that can stem from it has provoked a wrenching debate among nursing-home operators, regulators and families. There are few effective medicines to manage the outbursts of Alzheimer's patients -- behavior that can overwhelm family members trying to care for a loved one at home, and strain the resources of those trying to maintain order in nursing facilities.

Federal law strongly discourages nursing homes from physically tying down unruly patients. But federal health-care programs such as Medicaid do pay for drugs that may help calm aggressive behavior and agitation associated with Alzheimer's.

Medicaid in 2005 spent $5.4 billion on atypical antipsychotic medicines -- more than it spent on any other class of drugs, including antibiotics, AIDS drugs or medicines to treat high blood pressure. Atypical antipsychotics are approved for schizophrenia and bipolar disorder. But in what is known as "off label" use, doctors often prescribe the drugs to elderly people with dementia.

The widespread use of antipsychotics among the elderly has begun to draw criticism from regulators, researchers, lawmakers and some in the nursing-home industry. Sen. Charles Grassley, the ranking Republican on the Senate Finance Committee, this month asked several drug manufacturers for records on how they may have marketed these drugs for use in geriatric patients. He also has asked the Inspector General of the Department of Health and Human Services to investigate use of the drugs in nursing homes.

The $122 billion nursing-home industry has evolved toward large, often understaffed institutions. A law signed by President Reagan in 1987 sought to limit physical and chemical restraints in nursing homes. But in the late 1990s, with the introduction of new medicines called atypical antipsychotics, use of psychotropic drugs among the elderly began to creep up.

According to CMS, nearly 21% of nursing-home patients who don't have a psychosis diagnosis are on antipsychotic drugs. A 2005 study, published in the Archives of Internal Medicine, found antipsychotics were prescribed not only for psychosis, but for depression, confusion, memory loss and feelings of isolation, says the study's author Becky Briesacher.

Last year, CMS instituted new guidelines to limit the use of antipsychotics. Even so, under federal rules, it's still easier for nursing homes to get reimbursed for giving patients extra pills than it is for hiring extra staff.

An elderly person with Alzheimer's often isn't able to refuse antipsychotic drugs, says Cynthia Rudder, of the Long-Term Care Community Coalition, a New York patient-advocacy group. "You are basically quieting them against their will, and it is absolutely horrendous," she says.

Family members can object to the use of such drugs. But they risk having the facility threaten to discharge their relative on grounds that they pose a danger to themselves or others.

At CMS, officials stress the need to shift to smaller, less-rigid facilities as a way to reduce antipsychotic usage. Dennis Smith, director of the Center for Medicaid and State Operations, says nursing homes should seek "a different model" of care, so that when dealing with patients in distress, the solution isn't only "unlocking the drug cabinet." His agency is pursuing a twofold approach, offering alternatives to nursing homes -- such as the option to live in the community -- and trying to improve nursing homes by letting them know "they will be open to scrutiny."

Some nursing-home-industry officials agree change is needed. "We cannot treat people by simply throwing psychotropic drugs at them for our convenience," says Larry Minnix, president of the American Association of Homes and Services for the Aging. While there are "really good places where physicians and nurses monitor this carefully, that is the exception not the rule," he says.

Yet replacing drugs with approaches that require a more human touch is easier said than done. Staffing remains an issue: According to CMS, nursing-home patients, on average, receive a half-hour of care per day from a registered nurse, plus 48 minutes from a licensed practical nurse and two hours and 18 minutes from an aide.

There are some Alzheimer's patients for whom nonpharmacological approaches simply don't work, says William Thies, a vice president at the Alzheimer's Association in Chicago, and in these cases antipsychotics may be warranted. But the drugs need to be used very carefully, at the lowest dose and after ruling out a medical problem, says Dr. Thies, who has a doctorate in pharmacology.

Still some nursing homes are trying alternatives. At Providence Rest Nursing Home in the Bronx, distraught Alzheimer's patients are given massages and aromatherapy. Providence, a facility with 200 patients run by an order of nuns, has brought its overall reliance on antipsychotics down to 2% over the last few years -- and down to zero among patients who are not psychotic. At Bishop Wicke Care Center, a 120-bed facility in Shelton, Conn., the emphasis is on giving patients consistent caregivers -- avoiding staff turnover that can make life trying for residents. The home has also undertaken a project to get to know what patients were like when they were young, as a key to dealing with their angst.

At Cobble Hill in Brooklyn, the effort to wean Mrs. Johnson off antipsychotics is part of a broader effort by the facility's Chief Executive Officer Olga Lipschitz to make the facility more "homelike." Mrs. Lipschitz, who at 74 is the age of some of her patients, took over Cobble Hill in the 1970s following a scandal over conditions in New York nursing homes. "I have been at this for 35 years," she says. "Reform is constantly needed."

Some patients are responding well to alternative approaches. Others still need drugs.

After she retired, Mrs. Johnson lived on her own in Brooklyn. But she began to wander from her house. "Strangers were bringing her home," recalls her daughter, Shirlyn Breeden.

One day, a bruised Mrs. Johnson showed up at her church, unable to explain what had happened.

She was taken from one medical facility to another and given antipsychotics, her daughter says. Mrs. Johnson was on antipsychotics when transferred to Cobble Hill in May 2005 and the staff kept her on the medication. She was "combative with other residents at times," say her case notes.

"My mother thought this was her apartment and these strangers were living there. She would tell them to get their feet off the bed," Ms. Breeden recalls. "I would tell her, 'You're being mean to them,' but she would say, 'They know that you are not supposed to put your feet on the bed.'"

Ms. Breeden worried about her mom. "Her eyes were weak, she was incoherent, she couldn't complete a full sentence," she says. "That wasn't my mother -- she was never like that." Her mother was the kind of woman, she says, who never left the house without putting on lipstick.

The medication didn't halt her outbursts. Her daughter recalls a terrifying day when Mrs. Johnson moved her bed to block the door of her room, convinced strangers wanted to come in.

In 2005, Louis Mudannayake, Cobble Hill's medical director, decided the facility had too many patients on antipsychotic drugs.

"They were chemically 'shlogged,'" he says. "A patient who had had some quality of life earlier, who was able to interact and smile at her relatives and put a fork to her tuna fish, was no longer able to do that."

He began a chart-by-chart review of every patient on any type of antipsychotic. He formed a team -- including a psychiatrist, pharmacy consultant, a nurse, social worker, recreational therapist and nurse's aide -- that met roughly once a month. They determined which patients could be taken off the drugs and which ones could have doses reduced.

Initially, there was skepticism from the staff. Some nurses warned patients would run amok if taken off the drugs. Doctors balked, persuaded the drugs worked.

Ravi Amin, a psychiatrist who works at Cobble Hill and other facilities, says he has given orders at some of the other nursing homes to have a patient taken off antipsychotics only to find them countermanded by the unit nurse and the facility's on-site internist. "Doctors would be called to restart the medicine so that by the time I made the second visit, some patients were back on it," he says.

Mrs. Johnson had been on an antipsychotic called Seroquel for about a year and a half. In May, the team concluded she was a candidate for "environmental redirection." This meant that if she became upset, the staff wasn't to automatically reach for Seroquel, but try other ways to calm her.

Within a month, she was taken off the antipsychotic entirely.

"We began to give her little tasks -- pre-packaged spoons to give out, aprons to put on other residents," says Liza Long, a nurse who is the unit's community director. "She still thinks she's at work."

To her daughter, a telling change in Mrs. Johnson's life since stopping the antipsychotics is cosmetic: These days, she says, Mrs. Johnson rarely leaves her room without her lipstick on.

A spokesman for AstraZeneca Pharmaceuticals LP, maker of Seroquel, says "decisions about medical treatment are made by physicians" and the company doesn't recommend the drug "for uses other than its approved indications in schizophrenia and bipolar disorder." He says the boxed warning "contained in all labels for this class of drugs states there is 'increased mortality in elderly patients with dementia-related psychosis.'" He adds that the labels also state the drugs aren't approved for treatment of patients with dementia-related psychosis.

Some caretakers say that antipsychotics can be effective in helping an elderly loved one at home.

Serena Ferguson, 56, a physician, took care of her mother at home for years. In the throes of dementia, her mother would pace and wander and try to leave the apartment, she recalls. It was hard to get her to fall asleep and Dr. Ferguson had to place herself by the door to make sure her mom wouldn't slip out.

Dr. Ferguson says atypical antipsychotics were the only way to keep her mother safe at home. "They would calm her down," she says. "Those medications will make you drowsy, and she would go to sleep, and that is good, because I would go to sleep," she says.

Last year, her mother was admitted to Cobble Hill, where she remained on the antipsychotic drug Seroquel. But when the nursing home told her they wanted to wean her mom off the drug, Dr. Ferguson agreed.

Her mother has been off antipsychotics for about 11 months. Instead, she has been getting stimulation, her daughter says, including music and dancing.

When her 92-year-old mother, Mae, was young, she loved to go dancing at the Savoy Ballroom in Harlem. Mrs. Ferguson worked as a presser at a dry cleaner's to support herself and her only child.

On a recent Friday, Mrs. Ferguson sat motionless at the dining room table. She wasn't smiling; she had not eaten much.

Then a staffer put on a CD of Nat King Cole singing "Almost Like Being in Love." Mrs. Ferguson's eyes widened and she started to smile. With help from an aide, she rose and began swaying to the music, snapping her fingers. "Dance with me," she said to Dr. Mudannayake, the medical director. "I'd like to dance with all of you," she said to the staff.

Not all cases work out. Some patients relapse. Some receive reduced doses of antipsychotics, but show signs of distress. Others are taken off drugs and still suffer from symptoms of their brain disorder.

In 2003, the rate of antipsychotic use among Cobble Hill patients who didn't have a psychotic disorder was nearly 24%. Earlier this year, it had fallen to about 12%. But lately, the rate has crept up again, showing the constant struggle.

Sometimes little seems to work. After Cobble Hill patient Mary Goldman, a former college professor, suffered yet another stroke this year, she was no longer able to speak clearly. She began to scream uncontrollably, tugging at nurses. In an effort to calm her, the staff administered 75 milligrams of Seroquel, twice a day.

But Mrs. Goldman screamed even more loudly, sometimes for as long as an hour and a half, the medical director says.

When her case was reviewed earlier this year, the team recommended trying to taper her off the antipsychotic.

Now, Mrs. Goldman is off the drug. She still screams and cries out, her husband says, though not for as long. When his wife becomes distraught, he tries to soothe her by speaking gently, holding her arm, and stroking her hand.

"Sometimes it works and sometimes it doesn't," he says. "It does not diminish agitation completely but it does diminish it."

Lately, Cobble Hill has tried bringing books and magazines to Mrs. Goldman's bedside. "She is not really reading," says Dr. Mudannayake, "but they seem to comfort her and she yells and screams less."

Often she will merely fling them to the ground. Her husband bends down and picks them up.