Drugging dementia: Are antipsychotics killing nursing home patients?

In a special program Drugging America, America Tonight investigates the overprescription of powerful medication, the harm it's causing and who's benefiting from it. Tune in Friday at 10 p.m. ET/7 PT.

MISSION VIEJO, Calif. – When Gerry Gilgan left the hospital after brain surgery in February 2013, the 78-year-old went into hospice care at Irvine Cottages, south of Los Angeles. He had dementia, but was in good spirits and lucid when he arrived.

The next day, daughter Patrice Gilgan’s cellphone video shows a different man.

“Daddy, wake up! Daddy, wake up!” Patrice Gilgan says, unable to rouse her father, a retired New York City firefighter, who has since died.

Gerry Gilgan’s widow, Marie, was shocked by the sudden change.

“We took him into this home thinking this would be the best place for him,” she said. “[After] a day or two, he’s a different person. It was like he was a vegetable. There was nothing to him. Staring in space, drugged out.”

Within hours of his arrival, records show Gerry Gilgan began receiving the powerful antipsychotic medications Haldol and Seroquel.

Nursing homes justify the use of antipsychotics, saying they calm agitated, anxious or combative residents. According to the facility, Gerry Gilgan was “combative,” though closed-circuit cameras in the nursing home show no evidence of belligerent behavior.

Antipsychotic drugs are approved for patients with bipolar disorder or schizophrenia, not for dementia. In fact, the FDA has given its strongest warning – a so-called black box warning – telling physicians not to prescribe antipsychotics to people with dementia because they can cause heart failure, infection and death.

Despite the FDA warning, a Government Accountability Office report released this month found one-third of long-term nursing home residents with dementia have received antipsychotics. 

Antipsychotics are often given to patients for the benefit of the officials at the facility, in order to control them, said Carole Herman, founder of the Foundation Aiding the Elderly in Sacramento.

“The patient can’t walk anymore. The patient can’t talk anymore, and so there’s less care because basically the patient is incapacitated,” she said. “They’re zonked out all the time, so you don’t have to be bothered with them.”

Gerry Gilgan’s prescription for Haldol was "as needed," as frequently as every six hours.

St. Joseph Health managed Gerry Gilgan’s care, which was paid for by Medicare. St. Joseph declined to speak with “America Tonight” but released a statement:

“Each patient’s condition is unique and often has many factors to consider in determining the appropriate medications. We place high priority on a patient’s right to privacy, and out of respect for that privacy we are unable to discuss the specifics of this case.”

Five days after he arrived at Irvine Cottages, Gerry Gilgan fell and was taken to the hospital. He didn’t open his eyes for two and a half weeks, his daughter said. A state investigation later concluded Gerry Gilgan was “overmedicated.” [PDF]

Patrice Gilgan said her father was never the same after the overdose. 

Antipsychotics have carried the FDA’s black box warning since 2005. Even so, in 2011, the U.S. Department of Health and Human Services' inspector general issued a report saying dangerous and "off label" use of the drugs was widespread in nursing homes.

Marisa Conover’s mother, Genine Zizzo, was an independent, alert 82-year-old. She still drove, lived at home and did her own laundry. One morning in 2012, she tripped over tubing for an oxygen machine she’d started using for congestive heart failure. X-rays showed her back was badly bruised.

A doctor recommended about a week of physical therapy. Roseville Point Health and Wellness in Roseville, California, had a room available.

Before Zizzo checked in, Conover said she went to look at the home – to make sure her mother wouldn’t be getting antipsychotics. She said she’d heard about the dangers of the drugs from a neighbor.

“I went there specifically to tell them if that was their policy, to use antipsychotic drugs on an elderly person, then that would not be the facility for us,” Conover said.

The next morning, Conover went to the nursing home. A staff member approached and said they needed to talk because there had been an incident the previous night.

Herman of the Foundation Aiding the Elderly said doctors usually prescribe antipsychotics without ever seeing the patient.

“The person at the other end of the phone, which is usually the director of nursing or the charge nurse, will call and say, ‘Mrs. Smith is acting out. Prescribe something.’ And they’ll prescribe an antipsychotic because it knocks them out,” Herman said.

Prescribing drugs “off label” is legal, but drug companies are not supposed to promote or market drugs for uses not approved by the FDA. Three major drug companies have paid enormous fines to the U.S. government for just that.

Nursing home residents have a right to be involved in their health care planning and to be free from unnecessary medication, said Thomas Hamilton, director of the survey and certification group at the Centers for Medicare and Medicaid Services, known as CMS.

Hamilton said federal and state inspectors conduct 49,000 nursing home investigations every year, imposing fines or other sanctions when the facilities are deemed to be overprescribing antipsychotics. Since 2011, the overall use of antipsychotic drugs in long-stay nursing home residents has dropped from 24 percent to 20 percent, according to CMS.

Last month, Medicare began including antipsychotic use as a factor in a nursing home’s five-star quality rating. The new formula for calculating quality cut the number of nursing homes receiving four or five stars almost in half. 

At Ecumen Pathstone Living in Mankato, Minnesota, the use of antipsychotics has dropped from 18 percent to 6 percent after the staff received special training funded by a state grant. Behaviors like agitation or anxiety are seen as efforts to communicate, not as problems to medicate.

“They’re trying to get a message out. You just have to listen differently than you did in the past,” said Shelly Cornish, Ecumen’s housing director.

Sometimes, it’s a matter of diverting attention. In the memory care unit, each resident has a box with memorabilia – photographs and other small objects that carry a connection to the past. There’s also a crib with two lifelike baby dolls. On one occasion, Cornish said a patient was hallucinating that she could hear a baby crying. A staffer gave the woman a doll.

“She held it for literally two and a half hours and she was completely fine,” Cornish recalled. 

Cornish says that reducing antipsychotics has given residents their lives back.

“You give back that gift of the loved one to the family members,” she said. “And what I mean by that is, if you’re sleeping all day, you’re not having that relationship anymore.”

Before he died, Gerry Gilgan went to stay in a nursing home that didn’t believe in drugs, and his widow recalled seeing glimpses of the man she loved.

“I remember one night, I got a phone call about 10 o'clock. I said, ‘Oh, something happened,’” Marie Gilgan said. “And the nurse says, ‘Oh, Gerry's here with me in the office. He wanted to call you.’ And he sounded so like the old Gerry. ‘Gerry,’ I said. ‘How ya' doing?’ He said, ‘Good.’ He says, ‘How ya doing?’ He said, ‘I'm hanging out here with the nurse.’ I said, ‘Oh good for you.’ I said, ‘I'll see you tomorrow. He said, ‘OK, goodnight.’ And that was it.”