More than 1 in 6 nursing home residents with dementia on Long Island are being given powerful antipsychotic drugs even though their use is associated with an increased risk of death, records show.The drugs, used to treat schizophrenia and bipolar disorder, carry a black box warning -- the strongest -- from the U.S. Food and Drug Administration, stating that they are associated with an increased risk of death in elderly patients with dementia. They can also lead to strokes, heart attacks, Parkinson's disease-like tremors and falls.

Yet an average of 17.6 percent of dementia residents in Long Island nursing homes are getting the drugs, most of whom have no diagnosis of a psychotic disorder, according to statistics from the Centers for Medicare & Medicaid Services. Statewide, the percentage is 17.8 and nationally the percentage is higher still: 19.5 percent.

A 2011 U.S. Health and Human Services report found 88 percent of nursing home residents on antipsychotic drugs had a diagnosis of dementia, not of a psychotic disorder.

Dementia, which affects about half of residents in nursing homes, according to a 2013 National Health Care Statistics report, can be associated with violence, agitation, delusions and hallucinations.

But advocates have long maintained that antipsychotic drugs are not that effective in dementia patients and are often prescribed as a way to keep residents docile.

The Manhattan-based Long Term Care Community Coalition in a report last year said these drugs are "often used as a form of chemical restraint, stupefying residents so that they are more easy to care for."

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Assemb. Richard Gottfried (D-Manhattan), chairman of the Health Committee, who in February held a public hearing on the issue, agreed.

"The data are very clear: There are a lot of patients in nursing homes who are being drugged with very powerful psychoactive medications, essentially to keep them quiet, and this leads to not only reduced quality of life but also to serious medical deterioration of many patients," he said.

Gottfried said that he was looking to draft legislation "to improve the decision making about whether to medicate someone" and ensure that patients or their families -- who must give informed consent before antipsychotics can be prescribed -- fully understand what drugs are being given and their potential side effects.

In March 2012, the Centers for Medicare & Medicaid Services began a national initiative to reduce the use of antipsychotic drugs in nursing homes by 15 percent by the end of 2012. As a result, their use has slowly fallen -- by 18.4 percent nationally and 16.4 percent statewide since 2011. In February, the Centers, which evaluates all nursing homes on a five-star system, ramped up the pressure by including what percentage of residents are on antipsychotic drugs as part of its calculation of how many stars a home gets. Advocates hailed the move.

"It's really an important step toward making the ratings more useful to people," said Richard Mollot, executive director of the Long Term Care Community Coalition.

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More than drug prevalence

But prevalence of use is not the only measure. Lakeview Rehabilitation and Care Center in Middle Island has among the lowest rates of administering antipsychotic drugs on Long Island -- 10.4 percent. Nonetheless, it was cited by the state Department of Health in its Oct. 23 annual survey for giving a resident with Alzheimer's disease unnecessary drugs.

According to the state, the resident showed "no documented evidence of mood disorder, psychosis or behavior concerns." Yet the resident was prescribed Risperdal, used to treat schizophrenia and bipolar disorder.

According to the survey:

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"A Pharmacy Consultant Review Form (PCRF) dated 10/14/14 documented that the resident was receiving risperdal for a diagnosis of Alzheimer's disease. The PCRF documented to please change the indication to bipolar disorder and that risperdal was not FDA approved for an indication of Alzheimer's disease.

"An interview was held with the resident's physician on 10/21/14 at 11:00 AM. The physician stated that he approved the pharmacist's recommendation over the phone to change the resident's diagnosis to bipolar disorder and did not complete an assessment to warrant the diagnosis for the resident since the resident had no documented history of the disease." A Lakeview official declined to comment.

 

Death triggers scrutiny

The state also cited Medford Multicare Center for Living, which is under scrutiny by federal and state inspection teams after a ventilator death in 2012 led to still-pending criminal charges against eight employees and the nursing home. In Medford's Nov. 18 inspection, the surveyors examined a resident with dementia, diabetes and depression given the antipsychotic Haldol.

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As in the Lakeview incident, the pharmacist "documented to please change the diagnosis to an appropriate Federal Drug Administration approved diagnosis for haldol . . . "

Several psychiatrist reports document "her sad mood, periods of restlessness and wandering and to continue haldol for psychosis." However, the survey stated "there is no documented evidence in the medical record that the resident had symptoms of psychosis paranoia or personality disorder . . . "

Medford administrator Daniel Monahan said the resident showed no behavioral symptoms because the Haldol was effective. In fact, he said, attempts to gradually reduce dosage of the medication resulted in the re-emergence of previous symptoms. And, he said, the pharmacist's report should have said to change the diagnosis "if appropriate."

"There definitely needed to be better, clearer documentation of the internal angst causing the behaviors that would -- does, in fact -- justify the medication in this particular woman's case," Monahan said.

But Mollot said he was troubled that in both cases "the residents' symptoms were not related to appropriate use of the drugs. These are textbook studies of what should not be going on."

Nursing homes on Long Island -- as elsewhere in the state -- show a wide range in the percentage of patients with dementia getting various antipsychotic drugs: from a low of 2.5 percent to a high of 48.8 percent, with 44 nursing homes below the 17.6 percent average and 34 above.

Some of that reflects who the residents are, nursing home administrators said. For instance, only about 10 percent of the residents at the Orzac Center for Extended Use and Rehabilitation in Valley Stream -- which reports 2.5 percent of residents on antipsychotics -- and the North Shore-LIJ Stern Family Center for Rehabilitation in Manhasset -- which has 7.6 percent -- are long-term care residents, according to North Shore-LIJ Health System, which owns them. Most are short-term, there for rehab and less likely to have dementia.

However, Kenneth Gaul, owner of Woodhaven Center of Care in Port Jefferson Station, said that 23 percent of the residents in the attached assisted living facility are classified as mentally ill and many of them end up in the nursing home. That, he said, accounts for much of the 38.9 percent of residents in his home who are on antipsychotic medications.

"That doesn't mean we don't have people making a mistake but we certainly keep an eye on it," Gaul said.

 

Training called a factor

Dr. Jeremy Koppel, a geriatric psychiatrist at the Zucker Hillside Hospital and an Alzheimer's disease researcher at Feinstein Institute for Medical Research, both part of North Shore-LIJ, said the prescriber's amount of training can contribute to rates of drug use. "Lots of psychiatric nursing home consultants are not geropsychiatry trained, and that is a problem," he said.

Koppel said that earlier in his career he treated a resident who had been seen by a doctor not trained in geropsychiatry. "The patient, an 87-year-old male with a history of very vivid and distressing visual hallucinations in the context of fluctuating confusion, was seen by this previous clinician and started on an antipsychotic for psychosis," Koppel said.

But, Koppel said, he developed "intolerable" Parkinsonian side effects -- such as rigidity and difficulty walking -- soon after he began taking the drug. Koppel was called in and diagnosed him with Lewy body dementia, the second-most common type of dementia after Alzheimer's disease. People with Lewy body dementia are especially sensitive to antipsychotics and can develop severe Parkinsonian side effects, but they also respond well to rivastigmine, used to treat Alzheimer's patients, Koppel said.

"I treated the patient with rivastigmine and his hallucinations went away, he was more alert, and he didn't need an antipsychotic," he said.

A U.S. General Accounting Office report released March 2 identified several factors contributing to a nursing home's decision to prescribe antipsychotics, including the ratio of staff to residents: The fewer people to take care of residents, the more likely harried workers will resort to drugs if a resident acts out.

While Long Island nursing homes with the lowest use of antipsychotics tend to have higher staffing ratios, that isn't consistently the case.

Currently nursing homes self-report staffing and nursing ratios, which Mollot says can be inflated before annual state inspections. By the end of 2016, the Centers for Medicare & Medicaid Services will require homes to report staffing levels based on payroll records -- a change Mollot said will give a much more accurate reflection.

The GAO report also said the culture of the facility and staff training were key.

 

Nondrug therapy helped

Prompted in part by the Centers initiative, Our Lady of Consolation Nursing & Rehabilitative Care Center in West Islip, where 42 percent of residents have dementia, in 2012 decided to try to cut its use of antipsychotics.

Theresa Rosenthal, vice president of clinical services at the home, part of Catholic Health Services, said home officials had come across an article about the soothing qualities of lavender and decided to use it in one unit of the home.

Employees began spraying pillows and rooms with lavender scent and massaging residents with lavender lotion. They were astonished by the results, she said, and the lavender "therapy" was expanded to include other nondrug approaches -- such as serving Chamomile tea and muffins to agitated early-morning risers.

The percentage of residents on antipsychotic drugs fell from 15.23 percent in 2012 to 10.4 percent in 2014 -- a drop for which the Healthcare Association of New York State last year gave the nursing home its Pinnacle Award for Quality and Patient Safety.

Other Catholic Health Services nursing homes now routinely use the West Islip center's approach and are introducing other therapies. They include giving residents devices loaded with their favorite music, also shown to help reduce agitation.

On a recent morning, resident Ann Mierzwa, 94 -- who does not suffer from dementia -- appeared upset that she had been made to wait and worried she was going to miss lunch. But soon certified nursing assistant Pauline Smith was rubbing her hands with lavender lotion and she was avidly chatting.

For the staff, the lavender therapy is a valuable alternative that often works.

"It's the culture of our facilities now," Rosenthal said. "The doctors have a buy-in; everyone's involved."

CORRECTION: The nationwide drop in the use of antipsychotic drugs in nursing homes was incorrect in an earlier version.