Are there alternatives to antipsychotic drugs to treat dementia?

The question

My mother has dementia and lives in a long-term care home. She was put on an antipsychotic drug because she was hard to control. I'm worried about her. She seems zonked out all the time. Is there another option?

The answer

It's fairly common – maybe too common – for dementia patients to be given antipsychotic medications.

The drugs were originally developed for people with schizophrenia and other disorders that produce psychotic symptoms such as visual and auditory hallucinations.

Dementia patients can also have hallucinations. So, years ago, doctors began prescribing them to dementia patients who suffer from psychotic episodes or exhibit other troubling behaviour such as aggression and agitation.

However, a growing body of research now suggests that prolonged use of antipsychotic drugs can pose risks to patients, including slightly increasing the chance of developing electrical abnormalities in the heart or causing rigid movements resembling Parkinson's disease.

What's more, patients taking these drugs face an elevated chance of death from all causes, compared to those who are not on them, says Dr. Barbara Liu, a geriatrician at Sunnybrook Health Sciences Centre in Toronto.

The reason for the elevated risk of death isn't entirely clear. But it's possible the effects on the heart or sedation caused by the medication leads to a host of health problems, ranging from bedsores to catastrophic falls.

To minimize the risks, the drugs should be used only under limited circumstances, such as:

• The patient poses a risk to self or others.
• The behaviour is preventing essential medical care from being delivered.
• The patient appears to be suffering as a result of the delusions and hallucinations.

Medication can be helpful in some patients, but other approaches should always be tried first, says Liu.

She notes aggression or agitation can be an expression of an "unmet need."

In the moderate to severe stages of dementia, patients may lose their ability to communicate. They might be in pain, hungry, bored or have any number of other complaints, but be unable to tell anyone what's bothering them.

"We need to know what's the root cause of the behaviour," says Liu.

Family members can sometimes help health-care providers figure out what's troubling a patient, says Dr. Ilan Fischler, physician-in-chief at the Ontario Shores Centre for Mental Health Sciences in Whitby, Ont.

He points to the example of an elderly man who is a very private person and feels uncomfortable being seen naked. Family might be able to explain why the patient starts "hitting out" whenever staff tries to take off his clothes – and possibly suggest strategies to improve the delivery of personal care.

Of course, there will be times when the best efforts fail and a medication is an appropriate option, Fischler says. But that doesn't mean a patient should remain on a drug forever because the condition can change over time. "You should try weaning them off the medication and see how they do."

Unfortunately, some patients are put on the drugs and left on them indefinitely. But there is now a growing awareness that's not ideal care and attempts are being made to reduce antipsychotics. Alberta, in particular, has made huge strides.

In 2011-2012, about 26.8 per cent of the residents in Alberta's long-term care homes were prescribed these medications – lower than the national average of 30 per cent in such facilities.

Alberta was able to further reduce medication by providing staff with specialized training at a series of workshops.

"This project was really about helping the teams feel safe taking people off antipsychotics – and confident that disastrous things were not going to happen," says Mollie Cole, an advance practice nurse and co-leader of the project in her role as manager of the Seniors Health Strategic Clinical Network for Alberta Health Services.

Staff was encouraged to start with a gradual dose reduction on a few patients who didn't seem to need the drugs any more and then observe what happened. Most of the time, there was no immediate change in the person. In 5 per cent to 10 per cent of patients, the troublesome behaviours returned and they had to be put back on the drugs.

In the vast majority of cases, however, the residents gradually began to "wake up," Cole says. "They were better able to connect with their environment – they weren't sleeping all the time," she explains. "We even had people who started playing a musical instrument again."

With each success, more and more patients were weaned off the drugs. According to the latest figures, only about 18 per cent of the residents in Alberta's long-term-care homes are now on these drugs. That's the lowest rate in Canada.

The example of Alberta shows that it's possible to significantly reduce antipsychotics.

Getting back to your question, if you think your mother is being medicated inappropriately, ask the staff to review her case. A trial dose reduction may reveal she no longer needs the drug.

Paul Taylor is a patient navigation advisor at Sunnybrook Health Sciences Centre. He is a former Health Editor of The Globe and Mail. You can find him on Twitter @epaultaylor and online at Sunnybrook's Your Health Matters