Day after day, Hazel Eng sat on her couch, a blank stare on her face. The powerful antipsychotics she was taking often cloaked her in sedation. And when they didn't, the 89-year-old lashed out at her nursing home's aides with such anger and frequency her daughter wondered if her mother would be better off dead.
Until, in a matter of days, everything seemed to change.
Eng's daughter, Jean Lynch, says her mother was moved to a different section of the Ecumen home in North Branch, Minn., and taken off every drug but her daily aspirin. She now beams as she ambles the hallways, reads the newspaper, tells stories and constantly laughs.
"Now I hope she lives till she's 200 years old," Lynch said. "She's just so happy."
Antipsychotics are meant primarily to help control hallucinations, delusions and other abnormal behavior in people suffering from schizophrenia and bipolar disorder, but they're also given to hundreds of thousands of elderly nursing home patients in the U.S. to pacify aggressive and paranoid behavior related to dementia.
The drugs can limit seniors' ability to effectively communicate, socialize or participate in everyday life. But a series of warnings has prompted a movement of nursing homes trying to reduce the decades-old practice, often resulting in remarkably positive changes.
Still, doctors say the drugs are sometimes the only things that help the small number of dementia patients that display psychotic behavior, making them a danger to themselves and others.
Ecumen's three-year-old program called "Awakenings" isn't just about reducing drugs. Personalized care plans use exercise, aromatherapy, pets and other methods. Patients who were sedated and detached are now playing video games, listening to music and playing balloon volleyball.
"It was quiet before but now it's not," said Eva Lanigan, a nurse who piloted Ecumen's program. "Life is going on here again."
A government audit released in May looked at Medicare payments for atypical antipsychotics, as a newer class of the drugs is known, and found in a six-month period that was analyzed in 2007, about one in seven nursing home patients aged 65 or older had been prescribed them. Some 83 percent of Medicare claims for such drugs were for off-label purposes such as dementia, the audit found.
Since 2005, atypical antipsychotics have been under an FDA warning alerting doctors they could increase the risk of death in patients with dementia due to heart attacks or pneumonia. The most common atypical antipsychotics are sold under the brand names Risperdal, Zyprexa, Seroquel, Geodon, Abilify and Invega.
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An older class of the drugs, known as typical antipsychotics, was added to the FDA warning three years later.
The warnings did not apply to other medicines widely used in nursing homes, such as the antidepressants Prozac and Paxil, and the anti-anxiety medicines Xanax and Valium.
Still, off-label use of antipsychotics has continued to be widespread. Some see it as a crutch, used to quiet seniors' outbursts or mask difficult personalities, though many others say it's the only pharmaceutical option to treat a patient with a cadre of behavioral problems.
"Give someone enough medications, you don't have to worry about them wandering around or cursing or fighting," said Dr. Karl Dhana, medical director at MorseLife, which operates a nursing home in West Palm Beach, Fla.
For several years, MorseLife has done quarterly reviews of any patient on an antipsychotic, antidepressant or sedative to see if such medication is necessary. At the start, around a quarter of patients were on such drugs. Dhana said the rate is now around 14 percent.
But the shift hasn't been without challenges. There are no FDA-approved drugs for behavioral problems related to dementia. Nursing home patients today are often sicker and showing more signs of behavior problems than in years past.
Dr. Jason Karlawish, a fellow at the University of Pennsylvania's Institute on Aging, said he uses antipsychotics in only about 5 percent of his dementia patients. But sometimes they're the only thing that helps, such as with a woman he treated who was showing clear signs of psychoses, convinced that her house was on fire.
She attacked caregivers, tore pictures off the wall, wouldn't eat or be bathed. When she was put on an antipsychotic, the symptoms subsided, Karlawish said.
"There is a role for these drugs," he said.
Cobble Hill Health Center, a Brooklyn nursing home, began a program several years back to reduce such drugs, but the home's medical director, Dr. Louis Mudannayake still remembers the doomsday prediction of one nurse.
"She said, 'Lou, you're crazy! We're going to have all the patients stripping," he recalled.
Cobble Hill has cut the number of patients on antipsychotics from about 30 percent to less than 15 percent, and the nurse's predictions never came true. The staff has learned to help patients avoid outbursts without pills. The solution is often simple: Asking before entering a room, serving a meal earlier or putting on a favorite Nat King Cole album.
Private "old age homes" began cropping up after Social Security was established in 1935 and by the 1950s, antipsychotic drugs were commonplace and remained so for decades. Some estimated as many as 85 percent of nursing home patients were being given antipsychotics before the Nursing Home Reform Law was passed in 1987.
The use of such drugs was reduced — by around one-third, by some estimates — after the law, but then began to increase again once new antipsychotics were introduced in the 1990s.
The FDA's warning on the drugs led to nursing homes again rethinking their use of antipsychotics. Dr. Izchak Kohen, a geriatric psychiatrist for North Shore-Long Island Jewish Health System, surveyed nursing homes across the country and found 39.1 percent had decreased their use of the drugs since the warning.
Spending by Medicaid — the largest payer of nursing home care in the U.S. — also indicates a shift. For all age groups, in the 2006 fiscal year, antipsychotics drug bills totaled about $7.9 billion for Medicaid. The following year, it dropped to about $4.9 billion. Spending in 2008, the latest year for which data is available, totaled about $3.7 billion.
However, the increasing use of generics may have also helped bring the dollar figure down. The addition of the Medicare prescription drug program, for which some Medicaid patients are also eligible, is also believed to have drawn down the spending figure.
It may be difficult to reduce the use of antipsychotics further, Kohen said, because there aren't alternative drugs. Kohen said he continues to have to prescribe the drugs in certain cases, particularly for elderly dementia patients who are paranoid or aggressive.
"Until we come up with better treatments, I think we're going to have to use them," he said.
Nicole Brandt, a pharmacist who teaches geriatric pharmacotherapy at the University of Maryland and has lectured on antipsychotic use, said low doses of the drugs can sometimes help a dementia patient who is agitated, delusional or hallucinating. But sometimes, she said the drugs are used to treat anxiety, depression or sleep problems, for which they're not helpful.
"There are times when you have to wonder if an antipsychotic is the best treatment," Brandt said. "There may be a safer alternative."
Eng, a retired department store worker with advanced Alzheimer's disease, continues to thrive without the drugs, her daughter says. Teeth grinding that started when she was on the medications, has gone away, and she's again able to feed herself finger foods.
More than anything, though, Lynch says she can tell her mother is happy again. She sees it in her face.
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