Activities, Advocacy, Antipsychotic drugs, Toward better care

seeing the potential when someone tears a sink off the wall

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.'”

“Determined!” I said to her,” Voyer quips. The audience laughs. So do I as I watch the video of Voyer delivering his remarks to the forum (in French). He’s doing an excellent job of reframing, of showing his colleagues why we need to see things differently.

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.”

Amen to that Philippe, amen to that.

https://myalzheimersstory.com/2017/11/15/the-broken-lens-of-bpsd-why-we-need-to-rethink-the-way-we-label-the-behaviour-of-people-who-live-with-alzheimers-disease/

https://myalzheimersstory.com/2018/06/09/take-off-the-blindfolds-and-banbpsd-an-open-letter-to-the-worldwide-dementia-community/

https://myalzheimersstory.com/2017/01/08/alzheimer-annie-invites-you-in/

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11 thoughts on “seeing the potential when someone tears a sink off the wall”

  1. Awesome article! My first thought was, “I wonder if he was in construction.” (Apparently, I’ve learned a lot from you. 🙂 I forgot, however, to tie it back to boredom. I think we have to remember that each individual has different needs in what may alleviate their boredom. This gentleman, for instance, may need physical activity where he’s exerting himself. I’m imagine I would be like this, because I get bored quickly when sitting for long, and I love to do things with my hands.

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  2. Amen is right! Isn’t that interesting. Things I never really thought about. A light just went on for me. My mother used to pick at the seams of her clothes! She had sewn her whole life!! That is amazing…and really sad, too. Thanks for sharing this, Susan…I can’t decide if I am happy to know that or sad….xo Diana

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    1. Yes Diana, it’s too bad that family care partners don’t have the knowledge, skills, and information they need BEFORE they start their care journey rather than after when it’s too late. That’s one of the things I’m working hard to change, so that others don’t have to suffer as I did, and is mom did as a result of my ignorance. Still, we do the best we can with the tools we have at the time.

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  3. Well said! It’s so true; we have to respect who they are and where their behaviours originate. As a writer, I can’t imagine being without a pen and paper nearby, or being forced to sit and twiddle my thumbs if I was physically restless. Even if my mind is gone or going, I’m sure I’ll have the same urges to be creative, the same need to be alone at times, the same requirement for some cerebral challenges. It’s really just common sense, isn’t it?

    How did the institutions get so far from respecting the individual and treating the collective? Or not even treating the collective – treating to meet the needs of the institution (as in $$$) if it’s private care, or struggling with reduced budgets, if it’s public care. Sad, sad, sad.

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    1. Thanks.

      Re: “How did the institutions get so far from respecting the individual and treating the collective?”

      I think the medical professions have forgotten what their purpose is, and the focus is all wrong. BJ Miller says this: “Medicine needs to be in service of humanity, not in service of itself.” I love that quote pulled from an interview here: https://www.youtube.com/watch?v=phM1wEqxUpk&t=2138s where he talks a bit about the “system” and “processing” at about 36 minutes in. The whole thing is worth listening to – a good mix of philosophy and practicality.

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  4. One important factor that is overlooked in men and women is hormone balance. Taboo subject to some but the power of sexual activity as a calming tool has not been properly explored. Women respond differently than men but the patient who was sexually active lacks companionship and is lonely and frustrated. Families and caregivers dare not even mention this as real life is not dirty talk.

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  5. Excellent article and discussion we need to know the person as a human being who he or she is now and who they were before to fully understand their behaviour and care for them. Daphne

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