Olivia Grandy
Saskatoon StarPhoenix
When Jon Guenter finally took his dad, who has advanced dementia, to the hospital a year and a half ago, he was at his “wits end.”
Guenter said he couldn’t keep up with his dad’s caregiving routine, which had grown more intense over the span of three years.
Harry, Guenter’s father, faced a hard reality for many in Saskatoon experiencing the progression of dementia and hoping for a spot in a long-term care home: Spend months waiting in a hospital setting that isn’t designed with the specific needs of your disease in mind.
That includes loud noises, a lack of a daily routine and confusion about why you’re being tethered to your bed by an IV.
After staff found Harry, 83, to be difficult and strong while trying to provide him with daily care, a doctor sat down with Guenter and his family and advised that Harry start a handful of drugs, including the antidepressant Sertraline (also known as Zoloft) and the antipsychotic Quetiapine.
Needing care for bowel incompetence, Harry did not receive a diagnosis of psychosis or depression from a psychiatric evaluation. However, his family felt there was no other choice but to have him take the drugs.
“There was really no option. This was their method of containing a person,” Guenter said.
Before the drugs, Guenter found his father strapped to his hospital bed on an early morning visit. Five months later, Harry was placed in a long-term care home in Saskatoon. He was finally able to get off the prescription drugs a few months ago.
“It was just a long process of getting him off. It took months of effort,” Guenter said.
In today’s strained health care system, experts say Harry’s story is not an isolated one. The risks associated with antipsychotic use without a psychosis diagnosis — including falls, fractures, stroke and even death — often outweigh any benefits for older adults in long-term care.
Researchers are warning that these drugs are being overused to sedate behaviours typical of dementia that may not actually require medical intervention.
“It’s not based on evidence, it’s based on trying to fit the older adult into a system that isn’t designed for them, isn’t staffed for them, doesn’t have capacity to care (for) them at that level that they need,” said Roslyn Compton, the director of a national non-profit BetterLTC and a nursing professor at the University of Saskatchewan who studies aging in place.
The federal government’s website defines aging in place as “having the health and social supports and services you need to live safely and independently in your home or your community for as long as you wish and are able.”
In an opinion piece co-written by Compton last month, she said pharmaceuticals like antipsychotics that restrict or modify behaviours are a type of “chemical restraint.”
“An audit done by the SHA in 2023, found that 13 out of 15 care homes overuse chemical restraints for residents who are not diagnosed as needing them. This statistic itself comes after a 2019 audit, and it found that the trends were worse than before,” she wrote.
The Canadian Institute for Health Information (CIHI) tracks the percentage of long-term care residents taking antipsychotic drugs without a diagnosis of psychosis. A sample of 152 care homes in Saskatchewan during the 2023-24 fiscal year found that about 35 per cent of residents were potentially inappropriately receiving antipsychotics.
In the same fiscal year, this indicator for the rest of Canada was about 25 per cent. In Saskatchewan and Canada, this indicator has been creeping up since the onset of the pandemic, with the two most recent national percentages remaining steady.
Unfortunately, compared to the national average, Saskatchewan is considerably higher with respect to potentially inappropriate antipsychotic use in long-term care homes,” said Erin Yakiwchuk, an associate professor at the University of Saskatchewan who teaches a course on managing pharmacotherapy in older adults.
Recently, a panel of Canadian experts supported by the Appropriate Use Coalition set a target for this indicator to drop to 15 per cent.
In an email to the StarPhoenix, CIHI similarly said it doesn’t expect this indicator to be zero, but a lower rate shows potentially less inappropriate use.
Further, 2024 Canadian guidelines show that the antidepressant Harry was prescribed, Sertraline, is not recommended for managing dementia-related agitation, but may be appropriate for dementia patients diagnosed with depression who have not responded to other social interventions.
“If you’re not on it at home, why do you suddenly need it when you come in? Why do you need it at such doses that it sedates you?” Compton asked.
Best practices for older adults with dementia
Recently, leaders in the dementia care space have begun using the term “responsive behaviours” to describe altered ways individuals living with these disorders communicate.
Compton and Yakiwchuk say understanding this concept is key to rewriting the script that can lead to the potential inappropriate use of these drugs.
“The term responsive behaviours moves away from it being a medical issue that requires a medical treatment, to something that’s a little bit more, perhaps, humanized in terms of this is a behaviour that’s in response to something, and we need to figure out what the root cause of that is,” Yakiwchuk said.
“The onus is kind of on the other person to do some detective work to figure out what the underlying meaning is.”
Responsive behaviours include calling out, wandering and lashing out.
In cases where antipsychotics are appropriate for those living with dementia, Compton said an assessment from a geriatric psychiatrist, a “go slow, go low” method and a reassessment after two weeks is ideal.
“(During a high anxiety time), you may need to use an antipsychotic for two weeks. However, it is very limited. It’s not used for sedation,” she said.
“It’s used to look at: how can we make the person more comfortable, decrease their anxiety, help them to function, rather than to help them be comatose.”
A vision for personalized care
Although staffing shortages in hospitals and long-term care homes in Saskatchewan are well-documented as widespread, Guenter says the challenges his father faced in the system feel personal.
Guenter himself says he was previously on a deprescribing journey from drugs similar to those his father was prescribed. Throughout that process, Harry was his biggest supporter.
“When I was placed on antipsychotics, he was the one who was fighting so hard for me. That’s what was so ironic,” Guenter said.
Now, Guenter spends significant time each week with his father, providing more personalized forms of care. For instance, giving Harry bone broth when he has a cold.
Compton, who visited a green care farm in the Netherlands and wrote about it for the StarPhoenix, is calling for a reassessment of how Canada’s health care system works for older adults.
“(Canadian) health care is ageist,” she stated.
Green care farms are alternatives to traditional nursing homes, designed to provide people living with dementia greater freedom, access to nature and a sense of purpose.
For Guenter, looking back on his experience navigating this system while advocating for his father is tough, but he said the potential for change gives him hope and has sparked a passion to work in long-term care.
“Right now, these care homes (have) very hard surfaces (and) fluorescent lighting. There’s nobody really holding their hand,” he said.
“I have a beautiful picture in my mind of a care home with plants and with water running and with sun shining, with windows that let the sun in, and that’s my end goal.”
