Advocacy, Antipsychotic drugs, Life & Living, Toward better care, Videos

what i said to the senators


On Monday, January 30, 2017, I addressed Standing Senate Committee on Social Affairs, Science and Technology. I told part of my story. There’s much more to tell. But I was pleased when Senator Ogilvie, who chairs the committee, responded in a way that validated once again what I know to be the case about the use of antipsychotics in dementia care.

“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.

I’ve extracted my bit of the Q & A, along with their comments in the video below. The full two-and-a half-hour session may be viewed here.

Listen to or read my poem for the senate.

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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.

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Advocacy, Poetry

a dementia care message for the canadian senate

Me and Mom July 12, 2014, on one of the occasions she had a black eye from having fallen.

I was invited by Senator Ogilvie (Chair), and Senator Eggleton (Deputy Chair), of the Standing Senate Committee on Social Affairs, Science and Technology, to participate in a panel discussion on the committee’s report Dementia in Canada: A National Strategy for Dementia-friendly Communities.

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.

a poem for the senate

©2017 punkie  

her dad said she had st-vitus dance
when as a child she skipped and pranced

then she died not long ago
because she stood, and didn’t know

her legs were weak from meds they gave her
to stop the so-called “bad behaviour”

she was robbed of living truly
by nurses, docs, and care unruly

her chapter last, a travesty
undeserved, a tragedy

the disease she had was not the cause
a fact that should give us all pause

she suffered at the hands of systems
the misinformed and money driven

big pharma and its paring knife
excised her mind for profits rife

warehoused, abused for four long years
restrained by drugs, and others’ fears

cuts and bruises, falls and scrapes
UTIs and no escape

that’s because some like to coddle
a glass half-empty biomedical model

and we dismiss before their time
ones we love on their last climb

“she’s gone,” they say, “she’s just a shell,
condemned to wander in dementia hell.”

my mom resisted, caused others trouble
they blamed it on an alzheimer’s bubble

but i knew different, i touched her core
sang her songs, found ways to soar

each day we went beyond the borders
of chairs reclining, and doctors’ orders

they tried to put us both in prison
because we didn’t care to listen

to edicts down from those above
we preferred to laugh, to love

like her brain, my voice was strangled
with plaques and taus and expert tangles

emperors still have new clothes
it’s time for them to be exposed

dementia lives have much to offer
worth open hearts and likewise coffers

as senators, sure, you must agree
it’s only death that sets us free

before we’re dead, we’re still alive
even dementia doesn’t kill our drive

let’s make count our wisdom gathered
so the press won’t say we blathered

i ask you please to be decisive
harken close, don’t sit derisive

elders are our blood and flesh
they deserve no less than best

thank you panel, parliamentary ears
for opened eyes, and sharing tears

i end this poem on bended knee
in hope you each will hear my plea:

together let’s fix this stuff that’s broken
not let good work be merely token

©2017 Susan Macaulay. I invite you to share my poetry widely, but please do not reblog or copy and paste my poems into other social media without my permission. Thank you.

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