When the call came through at 1 a.m. Sonja was shocked but not entirely surprised.
The voice on the other end of the line was from the care facility where her father lived. Her dad had fallen and hit his head, the voice explained. He was being taken to the emergency department.
“He needed stitches, all because he had tried to get up to use the bathroom,” says Sonja.
Sonja, a licensed practical nurse, blames her father’s accident on the change that had been made to his dose of Ativan right before his fall. The dose had been raised to two milligrams – four times more than his original prescription.
“It’s a dose that could knock anybody out,” Sonja says. She stresses that she didn’t want her father to be on Ativan, a benzodiazepine commonly used to treat anxiety and insomnia, in the first place.
It was not the first time she had disagreed with a doctor’s decision about how to manage her father’s dementia.
The progression of her father’s dementia was the reason that Sonja and his doctors even had to consider pharmaceutical options. Her dad was becoming increasingly disoriented and paranoid. With staff his behaviour was “aggressive and unmanageable.”
“I had requested something to help calm him down. I wanted it to be easier on the caregivers,” she says.
Before Ativan, her father was prescribed Zydis, an antipsychotic not approved for use in dementia patients. Both medications had side effects. “My father, who never drank a drop in his life would say ‘I feel drunk.’ He even walked like he was drunk,” she remembers.
Her professional experience meant Sonja new about the downfalls of the prescriptions her father was being placed on. When her father was on Zydis she repeatedly asking the care staff to stop using the drug, “It fell on deaf ears,” she says.
More concerning for Sonja was that the medications were only masking, not resolving, her father’s symptoms. “[The Ativan] was more for the caregivers convenience, not to help dad.”
Prior to the fall, even the Ativan was not working. Without consulting Sonja or her family, the staff at the home contacted a physician over the phone about an adjustment to the medication. That’s when the physician quadrupled her father’s dose to two milligrams. “That doctor never even saw my father, let alone assessed him,” Sonja stresses.
After the fall, once John’s case was taken over by a geriatric psychiatrist, this time he was placed on a new medication – a different antipsychotic – that eliminated her father’s delusions and aggressive outbursts. “It worked like a dream,” Sonja says.
There is considerable debate about the use of medication, like antipsychotics, to treat behavioural outbursts in dementia patients. Antipsychotics carry substantial risks, including the possibility of premature death. But in her father’s case, Sonja says it was necessary. “He was so aggressive that he was impossible to work with. Professionals couldn’t deal with him. My mother couldn’t deal with him,” she says. “He needed something.”
Not all patients dementia do though, she explains. Assessing whether a behavioural change is part of the progressing disease or because of a change to environment or health that can be easily fixed is often a task that falls to the nursing staff. “We have protocols that show the difference between delirium and dementia,” says Sonja.
She has a checklist of possible triggers for behavioural outbursts that she runs through before she “even thinks about changing any medications.” She rules out anything that could be causing the patient pain or discomfort, any changes in routine that could have upset them, and underlying health conditions like UTIs.
Care facilities can struggle with managing behavioural outbursts. “I spent several hours with the family of a patient who had been sent to the hospital because he was being aggressive toward staff in his care facility. They evicted him basically,” Sonja describes that experience as traumatic for both the patient and his family.
Where medication is appropriate and required, Sonja’s perspective is to “use the drug that works.”
Getting the prescription right, she admits, can take work. “A doctor can prescribe something in the morning and at bedtime, but the nurses may find that giving the medication at 5 p.m. in the afternoon may be better for that patient,” she explains. Careful administration of the drug can reduce some of the negative side effects of medication, which can be sedating or increase drowsiness.
“A dementia patient can’t verbalize back to you that ‘I feel this way or this is bothering me’ so there are challenges. It’s a little bit of trial and error,” she explains.
That’s why involving the family is so important, she says. “Physicians need to educate families on what to expect and explain that the drug might not work or it might take a while to work,” she explains. Family can also provide insights into the patient’s medical history, or simple changes that can improve their symptoms without turning to medication.
Because dementia has no cure, all care is a “little bit” palliative, Sonja says. Understanding that the families of the patient are experiencing a huge upheaval is essential. “I’ve been hit by an 80 year old lady. And I know that’s her disease talking, not her,” Sonja explains, “But for the family it is so hard to see a person you love like that, because you know they would be so embarrassed. I know my own dad would have been so embarrassed to know that he had hit somebody.”
For Sonja, whose father passed away, the relief that her mother got after her father was put on the right medication is a lasting reward.
“She was actually able to take him out in the yard. There was a museum across the stress from the home and my dad was actually a museum curator. She could take him there dementia or not,” she says. “My mother was able to enjoy him again.”
Do I really need to go to this?