The Dangers Of Antipsychotic Drugs In Nursing Homes

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It’s time to stem the tide of antipsychotic drugs in nursing homes. CARP calls for programs with creative solutions for better care.

Every year, 25,000 Canadians are diagnosed with dementia. And if one of them is your family member, it can break your heart if they aren’t receiving the best possible care.

That’s certainly how Janet Driscoll (her name has been changed for privacy) felt when her mom, who had Alzheimer’s and had moved into a Nova Scotia long-term care facility, went sharply downhill. Suddenly, she couldn’t hold a conversation or walk as easily. She started falling. “I asked a staff member what they thought about this,” says Driscoll. “I said, ‘She’s a very different person.’ They mentioned risperidone.”

Risperidone is an antipsychotic medication, one of several that are prescribed to seniors with dementia to control behaviour, often without strong evidence to support this use. (A 2012 study in Quebec found that 44 per cent of all antipsychotics are prescribed off-label.) People with dementia can be confused, anxious or frightened. Consequently, they may wander, shout or even strike out. Turning to antipsychotic drugs is so routine that in some Canadian nursing homes, more than 60 per cent of residents are taking them.

“I’m concerned that these medications have been a panacea for coping with problems in long-term care facilities,” says Wanda Morris, CARP’s vice-president of advocacy and COO. “They have side effects, which many family members see as horrifying—their loved one is sedated into a zombie-like condition. But if you’re short-staffed and underfunded, it’s much easier to care for sedated seniors than ones who are agitated and causing a disruption.”

Emerging evidence on the use of antipsychotic meds is disturbing. We now know that when they are given to older people to manage dementia symptoms, they don’t necessarily work, and they’re not at all safe. Seniors on antipsychotics have a higher risk of falling. As well, they’re more likely to develop an infection, have a stroke or die. Health Canada issued warnings more than a decade ago.

Furthermore, antipsychotic medication doesn’t actually minimize some of the behaviours they’re used for. It’s effective for extremely aggressive symptoms, says Angela Harvey, administrator at Finlandia Hoivakoti Nursing Home in Sudbury, Ont. “But for others, such as wandering, hoarding, repeated vocalizations, it’s not.” Side effects can include the sleepiness that Morris describes, as well as insomnia, confusion and agitation.

Those also happen to be symptoms of dementia.

In 2015, Health Canada imposed restrictions on the appropriate use of risperidone in seniors with severe dementia: only for the short term, only if they have symptoms of aggression or psychosis that could get someone hurt, and only if they haven’t responded to non-drug strategies. But doctors are still doling out the pills.

Driscoll wasn’t her mom’s care representative, so she isn’t sure what triggered the decision to use medication. But what she read online worried her. Driscoll asked the administrator if the abrupt change in her mom’s condition might be from the risperidone, not her dementia. “She said, ‘It’s very common for families not to accept that their parent is in decline.’ We just felt very helpless. It was devastating to see what happened to Mom.” Driscoll’s mother was kept on the drug for two years, until her death last year.

Next: “She was 100 per cent healthy…”

Alison Palkhivala had similar concerns when she discovered that her great-aunt, Jean, was given antipsychotic medication in her Ontario long-term care home without the family’s knowledge. “She was 100 per cent healthy, physically, but all she wanted to do was sleep. That tipped us off.” It was only after Palkhivala had Jean moved to a facility closer to her own home in Montreal that she confirmed Jean had been on an antipsychotic. It likely dated back to when Jean’s dementia made her believe she needed urgent medical treatment. “What seemed to disturb the staff is she’d get up in the middle of the night and scream down the halls that she needed to go the hospital.”

At Jean’s new residence, Palkhivala pushed hard to have the drug discontinued and noticed a difference. “She definitely had more energy. She was up during the day, and we could interact with her.”

About 150,000 men and women live in the 1,500-plus long-term care facilities across Canada, and CARP’s Morris is frustrated that antipsychotics are readily given to so many of them. “Instead of dealing with the underlying issues, like how do we support people with dementia, we’re trying to drug our way out of these problems.”

Individual provinces are, however, acknowledging the overuse of antipsychotics and beginning to track them in long-term care homes.

This has motivated a few facilities to do better. In Ontario, 32 per cent of seniors in long-term care in 2010 were given prescriptions for antipsychotics. That number went down slightly to 29 per cent in 2013. Alberta has managed to reduce its count to 18 per cent for those without a diagnosed psychiatric condition. But the national average is still around 27 per cent. In some provinces use has actually gone up.

What’s needed are education and training—to increase awareness of the risks, certainly, but also to figure out how to replace the drug with something that works better.

Caroline Shemilt is the former director of nursing care at Toronto’s Village of Humber Heights. Three years ago, her team cut the number of their residents receiving antipsychotics practically in half, from 32 per cent down to 17 per cent. The transformations in the men and women were astonishing. Says Shemilt: “We would see residents more alert, more aware, participating more in recreation activities. And it was rare to see aggression.”

That’s because as medication was reduced, staff were trying other strategies to care for them. “One of those things is consistency of staff. Even though someone with dementia may not know your name, they know if you’re a friendly face they can trust,” Shemilt says.

“Some workers would sing while providing personal care. The residents would sing, too, and it would distract them.”

“Often, when people get agitated or aggressive, it’s because their underlying needs have not been met,” notes Morris. “If we provide a reassuring environment, particularly one that reminds the individual of their former home or workplace, they are more likely to be calm.” An anxious resident who believes she’s late for work might be content to handle paper files. A lifelong caregiver might happily cuddle a realistic baby doll.

The government-funded Canadian Foundation for Healthcare Improvement (CFHI) leads an Appropriate Use of Antipsychotics collaborative, supporting dozens of long-term-care facilities across Canada that are striving to reduce their use of antipsychotics. CFHI provides funding and training but, as senior improvement lead Jennifer Major says, what’s really been key is for the facilities to be able to share their successes with each other. “We provide a networking opportunity. These nursing homes can come together and learn about how each other is implementing and sustaining their approaches.”

It’s working. More than half of the residents in these homes have had their antipsychotic drugs reduced significantly or removed altogether. The number of accidental falls has gone down. So have verbal abuse and physical aggression. Stakeholders across the country are now contacting CFHI, says Major. “Families and staff are hearing about the improvements to resident quality of life that have been achieved through the collaborative, and they want to be part of that.”

It gives hope to people like Nicole Berg (not her real name), who doesn’t want others to have to endure what her father did. He’d been a strapping farmer devoted to the outdoors. “He thought he’d be farming forever,” she says. Despite dementia, he remained physically strong and able to walk. That was challenging for staff at a nursing home in central Saskatchewan. “They wanted him to sit still. He wanted to go outside.” To control his “wandering,” Berg’s father was given three different kinds of antipsychotic medication during his 12-year stay.

His family hated the side effects, says Berg. “It either made Dad agitated and unruly or left him drooling and uncommunicative.” What if the care facility had explored his past instead of drugging him and provided programming that suited his active nature-loving character?

The facilities participating in CFHI’s initiative have had success with music, with gardening and even just by tweaking routines to better match preferences identified by families. Something as simple as switching a morning bath to the evening bath the resident is accustomed to, can be calming.

At Finlandia Hoivakoti Nursing Home, families of new residents are routinely interviewed upon admission. “We talk about who that person was, the careers they had, what their interests were, what time they like to get up in the morning,” says director of care Jennifer Hawkins. What they learn is incorporated into the care. Currently only 11.7 per cent of residents without a diagnosis of psychosis use antipsychotics.

“There are some bright spots out there. Some care facilities are doing a really good job,” says Morris. Not only do they report touching success stories but they’ve also found higher job satisfaction among staff. And there’s a strong argument to be made about cost savings.

They’re using fewer expensive drugs. Staff time isn’t tied up with managing disruptive behaviours or helping residents who are too sedated to feed themselves. “There’s the cost of sending someone off to emergency for a hip fracture if falls increase on these medications. The benefits outweigh the cons for sure,” Harvey says.

When Janet Driscoll visited her mom near the end of her life, she told her she appreciated everything she’d done for her. “I didn’t think she was conscious, but she reached out her hand to me, grasped my hand, told me that she loved me and said thank you,” Driscoll says. “I was very grateful.”

But to this day, it makes her wonder whether the side effects of a drug, and not dementia, robbed her mother of quality of life in her last years.

A version of this article appeared in the April 2017 issue with the headline, “Welcome to Zombieland,” p. 56-59.