First of two parts.
Rosanne Murphy was growing more agitated as she sank deeper into Alzheimer’s disease. Unable to bathe, dress, or feed herself, she would call her daughter in a panic many nights at bedtime, not remembering where she was.
It was time, her daughter, Alison Weingartner, realized - time for her mother, then 80, to move to a nursing home.
Over two months in early 2006, she visited 10 facilities, trying to make sure she picked the right one. Weingartner finally chose Ledgewood Rehabilitation and Skilled Nursing Center in Beverly because it had an Alzheimer’s special care unit and it was near her home. She could visit her mother often.
She knew what she liked about the home; it’s what she had no way of knowing that now haunts her.
Ledgewood is one of many nursing homes that have commonly used antipsychotic drugs to control agitation and combative behavior in residents who should not be receiving the powerful sedatives. Nineteen percent of such Ledgewood residents - those without a diagnosis for which the drugs are recommended - received the medications, anyway, exposing them to the risk of dangerous side effects.
Soon Weingartner’s mother would be one of them, starting a downward spiral that would include an increasing number of falls and seizures.
“There is a lot of guilt about putting your mom in a nursing home, and I felt I made a competent choice,’’ Weingartner said. “I wish that what I know now, I would have known then.’’
The situation she encountered at Ledgewood is alarmingly common in Massachusetts and across the nation, a Globe investigation has found. Federal data show that roughly 185,000 nursing home residents in the United States received antipsychotics in 2010 contrary to federal nursing home regulators’ recommendations - often elderly people like Murphy who have Alzheimer’s or other dementias.
The drugs, which are intended to treat severe mental illness such as schizophrenia, can leave people in a stupor. The US Food and Drug Administration has issued black-box warnings - the agency’s most serious medication alert - about potentially fatal side effects when antipsychotics are taken by patients with dementia.
Nursing home regulators have for years collected data about individual homes’ use of antipsychotics but have not publicly released facility-specific information, citing patient privacy concerns. The government finally provided the data to the Globe, 19 months after the newspaper submitted a Freedom of Information Act request.
The data show that in more than one in five nursing homes in the United States, antipsychotics are administered to a significant percentage of residents despite the fact that they do not have a psychosis or related condition that nursing home regulators say warrants their use. The proportion of homes using antipsychotic drugs in this fashion is even higher in Massachusetts.
These findings are included in an interactive, online database assembled by the newspaper to allow consumers for the first time to compare nursing homes’ use of antipsychotics. (Find it at bostonglobe.com/nursinghome).
Physicians have wide latitude to prescribe drugs, even for purposes not approved by the FDA or recommended by the federal agency that regulates nursing homes, the Centers for Medicare & Medicaid Services.
Still, both agencies say it’s not appropriate in most cases for patients suffering from dementia to be prescribed antipsychotics. The medications increase the risk of lethal infections and cardiovascular complications in these elderly patients, the FDA says. In addition, the drugs can cause dizziness, a sudden drop in blood pressure, abnormal heart rhythms, blurred vision, and urinary problems.
Dr. Michael Gloth, a Johns Hopkins University School of Medicine associate professor who specializes in the care of elderly patients, said antipsychotics have not been thoroughly studied in the types of residents typically found in nursing homes - elderly people with several illnesses who are taking multiple medications. But the limited data suggest they can be dangerous, he said.
“We have an inordinate amount of prescriptions written for a population that is already frail, and we know these drugs increase the risk for side effects, including death,’’ Gloth said. “So why are they being written?’’
Nursing home administrators counter that they sometimes must use antipsychotics to keep aggressive residents from harming themselves, other residents, or staff - the fog of dementia can cause people to punch, kick, or shove others.
The administrators say the government data exaggerate the problem of antipsychotic abuse because the numbers include patients on low doses that facilities are trying to wean off the medications.
“There are things out there the industry can do better, there is no question about that, but there are good things in the industry that are not seen because of these issues with the statistical data,’’ said Frank Grosso, vice president of pharmacy services at Genesis HealthCare, which owns 202 nursing homes in 13 states, including Massachusetts.
Many industry executives also complain that federal rules governing the drugs’ use are contradictory, and that nursing home regulations listing conditions that can be treated with antipsychotics were written about 20 years ago and weren’t updated when the FDA more recently approved two other mental illnesses - including bipolar disorder - for treatment with some of the drugs.
The government data reviewed by the Globe show that despite the industry’s complaints, antipsychotic overuse is prevalent. Nursing home residents diagnosed as bipolar constitute a small portion - only about one in five - of those identified as receiving antipsychotics contrary to regulators’ recommendations.
The top nursing home regulator in Massachusetts says her inspectors are “deeply concerned’’ about the amounts of antipsychotics used in some nursing homes. But Dr. Madeleine Biondolillo, who joined the state last year after working for a nursing home company, said some dementia patients benefit from antipsychotics, though they are the “vast minority.’’
“The reality on the ground is that to protect staff, and to protect other residents, folks want to have something effective and useful, and quicker is better when there is an issue of safety,’’ she said.
Two years ago, the Globe reported that Massachusetts was among the states with the highest percentage of nursing home residents receiving antipsychotics for conditions not recommended by regulators. The newspaper then requested data on antipsychotic use at all 15,600 nursing homes nationwide from 2005 to 2010, the most recent numbers available.
Late last year, the Centers for Medicare & Medicaid Services released the data, which the newspaper analyzed along with information on other characteristics of the roughly 1.1 million long-term residents of US nursing homes. (Homes with fewer than 50 residents were excluded from the analysis.)
Among the Globe’s findings:
■ In 21 percent of US nursing homes in 2010, at least one-quarter of the residents without illnesses recommended for antipsychotic use received the medications. In Massachusetts, the proportion was 28 percent.
■ There is a clear link between the rate of antipsychotic use in a nursing home and its staffing level. Homes that most often used these drugs for conditions not recommended by regulators had fewer registered nurses, who direct care, and nurses’ aides, who provide most of the hands-on care. Nursing home specialists say it can be more time-consuming for staff to keep dementia patients calm without using drugs.
■ The data do not include the reasons why patients received antipsychotics, but homes that most often used them for conditions unrelated to a psychosis tended to have more residents deemed by staff to have behavioral problems, including wandering, being verbally or physically abusive, or resisting care.
■ These homes also had a greater percentage of residents covered by the government Medicaid program, which pays nursing home bills for people with limited incomes or who have exhausted their savings. They also have fewer residents with private insurance, which pays a much higher rate than Medicaid to nursing homes. That means these homes have less money to hire staff.
The newspaper’s analysis shows there has been some improvement. Prescribing of antipsychotics for residents without a condition recommended by nursing home regulators has fallen nationally and in Massachusetts since 2005, the year the FDA issued the first of its two warnings against use of the medications in elderly patients with dementia.
Consumer advocates say the medications are still overused in many nursing homes. “We need to have strong regulatory action when we see residents being chemically restrained with these antipsychotic drugs,’’ said Toby Edelman, senior policy attorney with the Center for Medicare Advocacy, a Connecticut-based nonprofit group. She said state inspectors rarely cite homes for overprescribing antipsychotics.
Federal rules require homes to attempt, at least once a year, to gradually reduce a resident’s dose of antipsychotics, but psychologist Paul Raia, vice president of clinical services for the Alzheimer’s Association of Massachusetts and New Hampshire, said he finds that facilities often fail to do so. He trains nursing staffs to learn in detail residents’ preferences and customize care in ways that can ease agitation and reduce the need for drugs.
As Alzheimer’s progresses, extreme behaviors fade, he said. “But often you don’t see the person coming off the medication to test whether they are still needed.’’
Alice Bonner, the nation’s chief nursing home regulator, said in an interview that antipsychotics are overprescribed in many nursing homes, frequently because staff don’t “look at the root causes’’ of aggressive behavior.
To address the issue, the Centers for Medicare & Medicaid Services recently launched a multiyear initiative focused on training nursing home inspectors to better identify problems, and on helping homes to care for people with dementia without resorting to antipsychotics. In part, she said, nursing homes need to make residents’ surroundings less stressful.
“Nursing homes are environments we create that are not comforting, with alarms, shiny floors, and big rumbling carts,’’ said Bonner, who previously oversaw nursing home regulation in Massachusetts. “For a person with dementia, it’s confusing, frightening, and it causes anxiety.’’
No counseling about risks
Rosanne Murphy was first prescribed an antipsychotic in April 2007, a year after moving into Ledgewood. Once an effervescent woman, she had raised six children, walked avidly, and loved to sing. But Alzheimer’s made her increasingly agitated, and the nursing home recommended Seroquel to calm her, said Weingartner, whose written approval of the antipsychotic was needed because she is her mother’s health care proxy.
“Though I signed the waiver,’’ Weingartner said, “I did not receive counseling about the risks, so it was hardly an informed decision.’’
The medicine - which is FDA-approved for treating bipolar disorder and schizophrenia- didn’t seem to have much of an effect at first, Weingartner said, except that it appeared to exacerbate another problem - falling. Dizziness and sudden lightheadedness are listed as potential side effects of the medicine.
So are seizures. While Alzheimer’s patients can suffer seizures as part of the disease, it is not common, specialists say.
In April 2008, Murphy, then 82, was hospitalized after suffering a seizure. The discharge instructions from the hospital to the nursing home included a directive to reduce by nearly half the 100 milligrams a day of Seroquel Murphy was receiving.
That didn’t happen, according to Murphy’s medical records, which Weingartner shared with the Globe.
Murphy suffered two more seizures in 2008, was hospitalized, and still the Seroquel was not reduced. Murphy was, however, placed on antiseizure medication.
“I had had a fairly good experience with Ledgewood up till then and I thought they were trying to do right by my mother,’’ Weingartner said.
Then in 2010, her mother was accidentally rammed by a food cart at the facility, which broke her hip, Weingartner said.
Murphy was hospitalized and has been unable to walk since. Weingartner found another nursing home 25 miles from Beverly where staffers soon slashed her mother’s antipsychotic medication to about a tenth of what she had been receiving. Murphy is given a small dose to help her sleep at night, a common practice at nursing homes, although antipsychotics are not intended as sleep aids.
The reduction was immediately noticeable.
“She seemed more awake and alert,’’ Weingartner said.
Ledgewood executive director Frank Silvia declined comment on Murphy’s care, citing patient confidentiality, but released a statement saying that the care and safety of residents is the facility’s “number one concern,’’ and that it does not administer antipsychotic medications without “the proper consents in place.’’
Disparities in use of drugs
Across the country, there are gaping disparities in the use of antipsychotics in nursing homes.
At 10 facilities in California in 2010, every resident without a psychosis or related condition got the drugs anyway.
Meanwhile, a tiny number of facilities - 146 nationwide, including five in Massachusetts - reported no use of the drugs at all in residents without these illnesses. That’s about 1 percent of the US homes with at least 50 residents.
In Massachusetts, the home with the highest percentage of such residents who received antipsychotics - 71 percent - was Farren Care Center in Turners Falls.
Mark Fulco, spokesman for Sisters of Providence Health System, which operates Farren, said every Farren resident has a major mental illness, in addition to other conditions such as dementia. He said nursing home regulators’ rules listing the conditions for which antipsychotics are recommended are too narrow.
“All Farren residents receiving antipsychotic medications have a diagnosis or a clinical indication that supports the use of the medications,’’ he said.
The diagnoses include bipolar disorder, which is an FDA-approved condition for antipsychotics, but Fulco also listed illnesses that the FDA has not approved for treatment with these drugs.
Families tend to search for a nursing home in their community, and even homes near one another that serve similar types of patients have big differences in their reliance on antipsychotics.
At Blaire House of Worcester, which advertises itself as the only home in Central Massachusetts devoted entirely to Alzheimer’s and dementia care, 62 percent of the residents without a psychosis or related condition received antipsychotics in 2010. But at the Jewish Healthcare Center, also in Worcester and also serving many Alzheimer’s patients, just 16 percent did.
Administrators at Blaire House say they take difficult Alzheimer’s patients who are not accepted at other places and that all 43 residents being treated with antipsychotics have dementia and a psychosis or other justifiable reason to be prescribed the medications, even if they don’t have an FDA-approved diagnosis. Nearly three-quarters of its residents were on Medicaid in 2010, and more than half were listed as having behavior issues, according to federal data.
Housed three to a room, many of the residents were in bed napping when a Globe reporter visited one recent afternoon. About a dozen residents played Bingo, led by a couple of staffers.
At Jewish Healthcare Center, registered nurses had, on average, about 18 minutes more time per day to spend with each resident than those at Blaire House in 2010, according to the newspaper’s analysis of federal staffing data, which also shows that the center’s registered-nurse staffing exceeded the state median for nursing homes by about 50 percent. Additionally, 44 percent of its residents had private insurance that year, more than double the percentage at Blaire.
“We have lots of activities and try all kinds of interventions instead of going for the quick pill,’’ said Martina Salek, nurse manager of the center’s Alzheimer’s unit.
Nursing home industry leaders say they are working to reduce use of antipsychotics. The Massachusetts Senior Care Association, a trade group that represents most of the state’s nursing homes, has launched a pilot program in 11 facilities to train staff about alternatives to medication for handling difficult dementia patients. They learn, for instance, that agitation may be a sign of pain from an undiagnosed condition such as a urinary tract infection, which a dementia patient has no other way to communicate.
The country’s largest nursing home trade association and pharmacist groups have also started programs aimed at lowering antipsychotic use.
The efforts in Massachusetts may prove especially challenging. Unlike in most other states, many Massachusetts nursing homes use psychiatrists as consultants and they tend to be more aggressive in recommending antipsychotics than nursing home staff, said Biondolillo, the nursing home regulator who directs the state Bureau of Health Care Safety and Quality.
She said her agency is hampered in its efforts to offer more guidance because state budget cuts have significantly thinned the ranks of nursing home inspectors. She declined to detail the extent of the personnel losses.
Federal regulators acknowledge industry complaints about the lack of clarity of some of their guidance. A manual used by nursing homes and state inspectors says in one place that antipsychotics may be considered for “dementing illnesses with associated behavioral symptoms,’’ but then says three pages later that the medications should not be used for many of the behavioral symptoms common in dementia, such as wandering, restlessness, and insomnia.
Changes will be made to the manual as part of the federal government’s larger campaign to improve dementia care in nursing homes, said Bonner, who directs the nursing home division at the Centers for Medicare & Medicaid Services.
The agency is also working on updating its list of acceptable conditions for treatment with antipsychotics. Officials are leaning toward adding bipolar disorder to the list but taking off hallucinations, because it is such a “loose category’’ that invites overuse of the medications, said Edward Mortimore, who oversees analysis of nursing home data for the agency.
Federal rules give state inspectors authority to cite nursing homes if residents receive antipsychotics inappropriately. Until 2006, there was a specific citation for overuse of antipsychotics, but that year officials folded that citation into a more generic “unnecessary medication use’’ category that pertains to all medicines.
Bonner said her agency is considering reviving the specific citation for antipsychotic use to encourage more scrutiny, but is concerned that homes will instead use other sedating drugs that can also be harmful. “One of the things we want to do is to make sure that surveyors are looking out for a prescribing shift,’’ Bonner said. “Did a person get taken off of an antipsychotic and simply put on an antidepressant or antianxiety agent instead.’’
Some studies suggest that such changes are occurring, and that elderly dementia patients on antidepressants are at increased risk of falling. For the first time, Bonner’s agency is also planning this summer to post data on its website about antipsychotic use in each nursing home.
That is the information that was unavailable to Alison Weingartner when she went looking for nursing homes for her mother, and again in 2010 when she moved her to Prescott House in North Andover after she broke her hip.
She was surprised to learn from the Globe that Prescott had an even higher rate of antipsychotic use than where her mother had been. In 2010, 32 percent of its residents without recommended conditions were on the drugs. But administrators at Prescott said many of these residents had been tapered down to low doses.
Weingartner said she’s happy with her mother’s care. Now 86, Murphy seems to enjoy the singers and musicians who regularly come to entertain residents, and she is always up and dressed when her daughter visits. “They seem to be watching her,’’ Weingartner said, “and doing the right things.’’
Coming tomorrow: How some nursing homes have eliminated overuse of antipsychotics.Kay Lazar can be reached at firstname.lastname@example.org. Follow her on Twitter @GlobeKayLazar. Matt Carroll can be reached at email@example.com. Follow him on Twitter @GlobeMattc.