When Violet Zahn first saw her father after he was transferred from an Edmonton hospital to Carewest George Boyack, a care facility in Calgary, she was shocked. The man in the bed was barely conscious and unable to communicate or walk.

Three weeks later, caregivers found him unresponsive and transferred him to the hospital where he was treated for pneumonia. There, his attending physicians made the decision to wean him off the cocktail of medications they believed had relegated him to a semi-conscious state for so long.

Zahn couldn’t believe that her father’s dementia had led to the use of so many medications.

“It was so shocking,” she says.

Zahn’s roller coaster began years earlier when she arranged for a psychiatric social worker to visit her parent’s home to evaluate some changes in her father’s behaviour. “It took a little while and some testing, but they diagnosed him with Alzheimer’s,” she says.

Her plan was to get her father into a care facility, but his symptoms did not qualify for an immediate intervention. Zahn was left to wait until her father exhibited symptoms so extreme that it was no longer safe for him to live at home. “One day he pulled my mother’s hair and pushed her head down,” she says. She remembers thinking ‘this is it, now I can get him care.’

“It came down to have having to be forcefully removed from his home by police,” she recalls. From there her father was moved to a hospital in Edmonton where he was kept in limbo until his behavioural symptoms improved enough to move him into a care centre. The hospital was where the medications started.

Zahn can’t remember all the medications her father was on, but she knows there were a lot of them. She also knows one was an antipsychotic. Regardless of the concoction, the approach didn’t solve his behavioural problems. When he was conscious in the hospital, her father would have bouts of shouting and aggression. “You could tell he was terrified. And my mother was terrified for him,” she says.

A growing epidemic

Zahn’s experience with her father is not uncommon. The use of various medications to treat the behavioural symptoms of Alzheimer’s and dementia has become a subject of intense debate. Two classes of medication in particular are causing considerable concern.

The first are benzodiazepines which include brand names like Ativan, Valium and Xanax. They are commonly used to treat insomnia and anxiety, and can cause disorientation and falls.

The second group is antipsychotics. Physicians first introduced the use of antipsychotics in treatment for dementia patients in an effort to control the delusions and paranoia that can be part of the disease process. However, research indicates that the use of antipsychotics can have serious negative effects, increasing the risk of premature death and speeding up cognitive decline. They also cause agitation, insomnia, falls and confusion.

Side effects aside, there is another crucial concern with the use of antipsychotics: they have not been shown to work effectively.

“Care teams deal with some very challenging situations. If only there was a pill that really did help,” says Verdeen Bueckert, practice lead at the Seniors Health Strategic Clinical Network at Alberta Health Services. Bueckert is involved with the Appropriate Use of Antipsychotics (AUA) project at Alberta Health Services.

The project started as a pilot of 11 long-term care sites in Alberta in 2013. Within nine months the sites had reduced their antipsychotic use by 50 per cent.

The AUA project was driven by warnings from Health Canada in 2002, 2004, 2005 and 2015 about the use of various antipsychotics and growing awareness globally about the limited benefits and associated harms of the medications.

“Sedatives and antipsychotics are given to settle people or to help them sleep,” explains Bueckert. But in many patients, like Zahn’s father, the medications only create further behavioural side-effects, “which leads to more medications,” says Bueckert. In a small percentage of patients, antipsychotics may help for a time – but need to be re-evaluated as the disease progresses. And it’s important to stress that there are appropriate uses for these medications, including to treat  e.g. chronic mental health conditions such as schizophrenia.

A 2008 study found that antipsychotic use causes at least a threefold increase in the risk of “serious events” in seniors with dementia within 30 days of starting the medication. The study defined serious event as a hospital admission or death. Unless improvement is seen within 12 weeks, a 2006 study recommends that the use of antipsychotics should be discontinued.

Changing prescribing practices can be challenging though, says geriatrician Barbara Liu who works at Sunnybrook Hospital in Toronto. Families, care staff and physicians can see antipsychotics as a compelling solution. “Administering a medication may at some level be a more simple intervention that doesn’t involve a lot of time and energy on the part of the health care provider or other professionals,” she says.

She explains that in many instances the patient’s family can be distressed and can request medication in the hope of an instant fix. “People can feel very distressed about not being able to manage the behaviours a person is exhibiting,” says Liu.

There are some instances in which antipsychotics are the appropriate choice, says Liu, particularly when the patients themselves are in distress. “Delusions and hallucinations can be frightening, so you wouldn’t want to leave someone in that state,” she explains.

“Antipsychotics can be appropriate as a temporary strategy, for behaviours that put the patient and others at risk, in Alzheimer’s type dementia,” says Bueckert. When antipsychotics are prescribed, she adds, it is important to set a date to re-evaluate the decision and to consider whether the medication is helping, or is still needed.

In the vast majority of cases, medication should not be the first step, advises Liu. It’s “critical,” she says, that physical, medical and environmental causes of behaviour are ruled out first.

“We think of these outbursts and behaviours as expressions of an un-met need. A person with dementia just might not be able to express their needs verbally anymore,” says Liu.

First steps and better solutions

Zahn saw an immediate improvement in her father once he was weaned off the medications.

“He still has Alzheimer’s and its symptoms, but he’s happier. He’s more loving and verbally interactive and less physically aggressive,” she explains.

She says she watched as her father “blossomed.” Zahn attributes some of the changes to the low dose of anti-depressants her father is now on, a decision that came after care staff and physicians in Calgary spoke with Zahn about her father’s medical history.

“Sometime during his lifetime we had some inkling that he might have a mental health disorder. But he was not the type of man to take medication or turn to medical help,” says Zahn. She remembers moments where her father was withdrawn or agitated by bright lights or sounds and long stretches where he preferred to be alone.

After being given this information, the doctors suggested trying a low dose of anti-depressants in place of the cocktail of medications her father had previously been on. The result was more than Zahn ever expected. “His life is actually better now. He’s having some good years.”

While she attributes some of the change to the correct medication, Zahn believes much of her father’s improvement is also due to the way his care is being approached in his new care facility.

“It’s about treating the whole person, not just treating the symptoms,” she says. She adds, “Without the [excessive] medications he was given a chance to accept where he is, adjust to his routine and develop relationships and friendships with people.”

Bueckert describes this approach as person-centred care. For the AUA program, a major component is asking “what else can we try?” before turning to medication.

“Sometimes it’s discovered that the person has a dental abscess or that behaviours resolve when staff change their approach or learn non-violent crisis intervention skills,” says Bueckert.

Medically, the behaviours can be triggered by simple issues like dehydration, constipation, an infection or even dry skin. The way caregivers approach care, a change in routine or something as simple as room temperature can cause an outburst. Liu adds, “As much as possible, it’s our job to figure out what the need is and what is causing the behaviours.”

Too often something as innocuous as a bad night’s sleep is the culprit, says Bueckert. “A poor sleep can make anyone irritable. Imagine being woken up at 3 a.m. every night for routine continence care, and then being dragged into the dining room by 7 a.m. Would you hit someone?,” she asks? .

While Liu and Bueckert admit that isolating the underlying causes of behaviours or developing a new, less triggering approach to care takes more time, they both stress that the results are worthwhile.

Families, Bueckert says, can be a major solution. “Families have so much valuable information about the person’s history. They may have ideas about approaches that will work for that person,” she explains.

Zahn has personally experienced the influence she can wield with her father. “In the past he would out-shout me. Now I understand and I can gently talk him down. That’s why the staff were looking at medications in more appropriate doses – because those kinds of moments can be made to pass and then you have calm again.”

Bueckert says many people have “come alive” after being taken off antipsychotics. She admits that the work is difficult and puts pressure on already “bare bones” staffing in some facilities. But in most cases, staffing needs don’t increase with fewer antipsychotics, as patients are often able to do more for themselves, and are easier to get along with once staff modify routines and approaches.

Given the success of Alberta’s AUA program, Bueckert hopes more efforts can be made nationally to reduce the unnecessary and inappropriate use of antipsychotics to ensure more stories with endings like Zahn’s. She was an author of the Choosing Wisely Canada toolkit “When Psychosis isn’t the Diagnosis”, a toolkit for reducing inappropriate use of antipsychotics in long term care.

For Bueckert, it’s personal. “It begins with the story of my grandmother who is looking down from heaven and cheering me on – now that her antipsychotics have finally worn off.”