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"People with dementia getting drugged rather than helped"

Minneapolis Star Tribune

By WARREN WOLFE, Star Tribune
March 9, 2008

It’s hard to believe when you meet the vibrant 94–year–old Meta Miller today. But then her daughter Carol Johnson begins describing just how bad it got as she struggled to manage her mom’s dementia at home for seven weeks before Thanksgiving in 2006.

"She would roam the house all night with her cane, talking to imaginary people, knocking things down, yelling at me, accusing me of horrible things — my own mom," Johnson recalled with tears. "And it just got worse when she went to the first nursing home. That’s when she started screaming."

To cope, thousands of nursing homes nationwide are doing what a hospice program and then a nursing home did for Miller: using powerful antipsychotic drugs to quiet disruptive people with dementia — at times a step that’s easier and cheaper than taking staff time to fix the problem.

The practice is alarming Medicaid officials. Last year, they ordered state nursing home inspectors to crack down on it.

Of the state’s 398 nursing homes, 38 percent were cited last year for using such medications inappropriately, up from 27 percent in 2006.

So dangerous are the drugs that the Food and Drug Administration requires some to carry a "black box warning" that they heighten risk of death for older patients, a warning that it might extend to all antipsychotic drugs. They also increase the risk of confusion and falling.

The drugs often are prescribed whether the resident is psychotic or not.

In Minnesota, antipsychotic drugs are given routinely to 32 percent of Minnesota nursing home residents with dementia and behavior problems — and to 15 percent of residents who don’t have that diagnosis, the state Department of Health reported.

Antipsychotic drugs have become the No. 1 drug paid for by Medicaid, which regulates and pays for most nursing home care. They are prescribed for about 30 percent of all nursing home residents.

Coping with combative, irrational and sometimes violent behavior of confused people with dementia is among the most difficult situations for nursing homes and families.

Sometimes the drug treatment helps, said Dr. Robert Sonntag, an aging specialist with HealthPartners’ division of geriatric services. He works in 16 nursing homes, including Beverly LivingCenter–Hopkins, where he is medical director and Meta Miller’s physician.

"But sometimes, as with Mrs. Miller, it makes people worse — either more agitated or drugged into a stupor, much more likely to fall and break a hip," Sonntag said.

A rush to use drugs

It’s easy to understand why an aide might want a resident drugged after being bitten, scratched or bludgeoned — or seeing another resident attacked.

"You might use antipsychotics to treat schizophrenia or paranoia in older people. But you use the lowest effective dose, monitor closely for side effects and you start planning to reduce the dosage or stop it," Sonntag said.

"You don’t use antipsychotics just for Alzheimer’s, and you never, ever drug a patient to just make life easier for the staff or the family," he said. "It’s the team approach — doc, nurse practitioner, staff, family, maybe a psychologist — to make this work."

Unless the resident is combative because of a mental illness such as paranoia, there’s almost always a better way to control disruptive behavior in someone with dementia than with drugs, said John Brose, a Minneapolis psychologist who consults at more than 100 nursing homes, including Hopkins.

"Usually, that person is trying to communicate something — I’m too cold, too hot, constipated, frightened, tired, thirsty," he said. "Figure that out, then deal with the real problem."

He counsels staff members to back off for a time or try to distract residents with their favorite foods, music, photos, conversation or activities while identifying and removing the real problem.

With Miller — no longer in hospice care — it now appears her combativeness and agitation may have been caused primarily by modest dementia, pain in her swollen legs from congestive heart failure, severe deafness and constipation.

It was the growing use of antipsychotic drugs that prompted last year’s order by Medicaid officials that state nursing home inspectors get tough on use of unnecessary or inappropriate medications — a violation of federal rules.

Last year the state offered training on the issue to nursing home workers and inspectors.

"I’ve had more distress calls from nursing homes about that rule than anything else," said Darrell Shreve, director of regulation and research at the Minnesota Health and Housing Alliance, a nursing home trade group.

Use of antipsychotic drugs in the elderly extends far beyond nursing homes.

In Minnesota, nearly 8 percent of people 80 and older are given antipsychotic drugs — six times the general population — the Minnesota Council of Health Plans reported last month.

Vicious woman to queen bee

Meta Miller threw up her hands and grinned when she spotted Sonntag.

"The year, the month and the day, that’s what you asked me — and I got them all right," she bragged recently, describing part of a memory test Sonntag gave her two days earlier.

But 15 months ago she was a wreck.

A widow living alone in her Brooklyn Center home of 52 years, Miller was falling indoors and out, leaving the stove on, forgetting to eat and losing weight. And she was entertaining invisible visitors, some sporting prom dresses.

That’s when her daughter took Miller into her home. Miller’s doctor approved hospice care because she appeared to be dying.

"It was bad from the start because Mom was always in charge of everything, but now was pretty confused," Johnson remembered. "Then the hospice program started giving her Haldol to calm her, and it got worse. She was vicious."

The antipsychotic drug apparently exacerbated her agitation. After weeks of staying up nights while her mother berated her, Johnson admitted Miller to a nursing home.

"They kept her on Haldol and couldn’t handle her. They’d call me about Mom, and I could hear her screaming in the background. They sent her to a hospital psych ward."

After 10 days — now on a new generation antipsychotic called Seroquel that also didn’t help — Miller was moved to the Hopkins home and met Sonntag.

"The first thing I do with new patients is look at their medications and ask why," Sonntag said.

"Most people in nursing homes are overmedicated — heck, most older people are overmedicated — and not just on antipsychotics," he said. "The most dangerous drug in nursing homes is Coumadin," a blood thinner to prevent strokes and heart attacks. "But the risks are huge — bleeding, drug interactions, dizziness, loss of appetite."

He began weaning her from Seroquel and other drugs, and Miller blossomed.

"She’s kind of the queen bee of the dementia unit," said nurse Joan Sang, co–director of Miller’s dementia unit. "We communicate with her by writing notes. She reads the newspaper, talks to everybody and feels bad for the ’old people’ who wander into her room."

More typical of Sonntag’s patients is Helen Ross, 100, with advanced dementia, who had knocked down and hurt two aides and resisted help with care. He removed a range of drugs, including an antidepressant that had worsened her appetite and confusion.

"Sometimes she knows me, sometimes not, said her son, Gerald, his arm around his mother’s shoulder during a visit at Camilia Rose Care Center in Coon Rapids. "Without the drugs, she’s much more calm, much more stable. At this stage, that’s all we can ask for."

Back at Hopkins, while watching her mother give a visitor a high–five to celebrate "a wonderful day," Johnson heaped praise on the nursing home and on Sonntag.

"She’s a changed woman. We didn’t know enough to question the drugs they were giving Mom before," she said. "We learned the hard way."