“One of the things we noted in our four-part study on over-medication in Canada is that it is widespread throughout the entire medical spectrum,” Senator Ogilvie said, “and it becomes pronounced in senior care and even more pronounced in the case of patients with dementia. It is a major, dramatic problem.”
The senator went on the say that seniors’ human rights are “hugely violated in many areas,” particularly with respect to over-medication. I also wanted to high-five Professor Linda Garcia of the University of Ottawa, who said of LTCF care workers: “The people who do want to do good, and who do get it, can’t.” She is so right. Blocked by old glass-half-empty mindsets, I suspect these potential innovators leave the profession out of frustration at the poor standard of care as well as their impotence to do anything to change it. Being a whistleblower or an advocate is a tough row to hoe as I have found out these last ten years.
When I was deeply moved by the now-classic movie One Flew Over the Cuckoo’s Nest in 1975, I never dreamed I would live through a version of it more than forty years later. This image is drawn from the final scenes in which “Chief” tears the hydrotherapy cart from the floor (as McMurphy had been unable to do despite his best efforts), and throws it through a window to make his escape after having suffocated his friend.
~~~~~~~~~~~~~~~
“Philippe, we have a case like you’ve never seen before,” Philippe Voyer begins as he recounts a story to Quebec Health Minister Gaétan Barrette and hundreds of participants at Quebec’s first-ever Best Practices in Long-term Care Facilities Forum. “We have a man who tore the sink right off the wall.”
Voyer, a researcher and professor of nursing at the University of Laval in Quebec city, surprised the care home staff member who had called him complaining of an unmanageable and destructive patient with Alzheimer’s disease with his answer, just as he likely is the healthcare professionals gathered at the forum.
“That sounds to me like a man with a lot of potential,” Voyer continues with his story. “He’s focused–he had to be to do what he did. He still has a lot of strength, he’s in good physical shape, what he did was impressive. I have no doubt we’ll be able to engage him in some way.”
Voyer looks at the audience, pauses slightly before he goes on. “Then the nurse tried to convince me with more evidence: ‘Oh but Philippe, you should see what he did down the hall. He ripped all the tiles from the floor with his fingers.'”
Voyer is one of a small but growing number of medical professionals worldwide who have begun to understand that so-called behavioural and psychological symptoms of dementia (BPSDs) that are blamed on Alzheimer disease and other forms of dementia are in fact not caused by the disease.
“The disease is a predisposing factor,” Voyer admits, “but it’s not the main cause. Boredom is. People in long-term care get bored, and, like we all do when we get bored, they find things to do. But the things they find to do are not always in line with what facility staff would like.”
I know the truth of what he’s saying because I witnessed it myself day after day when Mom was in what I have come to describe as “elder jail.” I’ve also heard countless stories from other care partners who experienced the same thing when they placed family members in LTC. It’s not the disease. It’s how we “care” for the people who live with it. Misunderstanding their behaviour often leads to over-medication with antipsychotic drugs.
“Some residents who have dementia may have worked all their lives doing manual labourer, for example,” Voyer elaborates. “When they feel bored, they go back to doing what they know. We learned that the gentleman who tore the sink off the wall and the tiles from the floor had been employed in home construction. He was just doing what he knew how to do. Likewise, people who are bored may start to explore. They go into other people’s bedrooms. When they do, they get involved in altercations with other residents. Soon they are labelled as having behavioural issues. What to we do then? We medicate them. It’s as simple as that.”
My experience and Voyer’s observations are supported by a growing body of evidence-based research. Recent work by Dr. Jiska Cohen-Mansfield, who has been studying age-related dementia for decades, and is an authority on the subject, clearly identifies these main causes of responsive behaviour:
boredom
lack of stimulation
loneliness
lack of activity
insufficient social interaction
being uncomfortable
pain
“It’s not rocket science,” concludes Voyer. “There are many things we can do to change the situation. And I can tell you with certainty that antipsychotics are not effective in alleviating boredom. It’s time to rethink and reduce our use of antipsychotic medications in treating people who live with dementia.”
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I was pleased to attend on Monday January 31, 2017, when Senators Ogilvie and Eggleton, and their colleague Senator Olsen welcomed a six-member panel to discuss issues relating to the committee’s report, which called for the development of a national dementia care strategy for Canada. I was also grateful for the opportunity to add my voice in the Q & A session, which followed the panel discussion. This poem was inspired by the report, the panel discussion and my own remarks.
a poem for the senate
Dedicated to the cause of creating a dementia care strategy for Canada.
My Alzheimer's Story 