As part of the campaign, fellow human rights and dementia care advocate Kate Swaffer penned “Rethinking Dementia: Normal Human Responses,” an excellent post wherein she lists fourteen simple examples of why we should #BanBPSD. Here are five from Kate’s list of 14 [I’ve added bits here and there, which I have enclosed in square brackets]:
Labeling and medicalising normal human responses to being segregated [and isolated] is wrong; it is also a breach of our most basic human right under the Convention on the Rights of Persons with Disabilities (CRPD).
Labeling and medicalising normal human responses to being forced to live in an institution is wrong; we know institutional care ensures poor care, and [given the] choice, almost no one wants to live in [an institution].
19 ) Labeling, medicalising and punishing an individual’s normal human responses to cruel, abusive, harmful and wrongful treatment by physically restraining them is abuse.
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The term “behavioural and psychological symptoms of dementia” (BPSD) is a harmful artificial construct used to inappropriately describe reasonable responses to adverse conditions and circumstances (RRACC) when such responses are expressed by people living with dementia (PLWD).
The term BPSD was coined in the late 1990s by the International Psychogeriatric Association (IPA). Twenty years on, a growing number of dementia care advocates worldwide are calling for the BPSD construct to be rejected by the geriatric healthcare professionals and researcher and to be banned from dementia care language (#BanBPSD). Prominent among those calling for the paradigm shift are dementia care pioneers Kate Swaffer, former nurse and care partner, speaker, blogger, activist, and author of What the Hell Happened to My Brain?, and Dr. Allen Power, geriatrician, speaker, author, trainer, consultant.
Dr. Power, whose books Dementia Beyond Drugs and Dementia Beyond Disease, are essential reading for geriatric health professionals, care workers and care partners, summarizes the problems with BPSD like this:
1 ) Relegates people’s expressions to brain disease
7 ) Misapplies psychiatric labels, such as psychosis, delusions and hallucinations
Essentially, the broken lens of BPSD stops us from seeing the real causes of the reasonable reactions to adverse conditions and circumstances (RRACC) when expressed by PLWD, and thus impedes dementia care practitioners and researchers from finding and employing effective, enabling and engaging solutions to the distress experienced by many PLWD.
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I share this video because it demonstrates in a concrete, compact, and comparative way some of the physical and psychological effects the inappropriate prescription of antipsychotics had on my mother over a period of three years. This isn’t the end of our story. There’s much more proof to come.
I’m compelled to share our experience so the people you love, and you don’t suffer as Mom and I did. I also want to make it known to care providers, governments and our society overall that it is our collective obligation to provide people who live with dementia and older adults the care they deserve. It’s a human rights issue.
I hope people of the future look back with incredulity at where we are today and say “We can’t believe they did things that way.”
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For about 80 years, it was accepted as scientific fact that rabbits were first domesticated in 600 A.D. as a result of a decree issued by Pope Gregory the Great declaring that fetal rabbits could be eaten during Lent.
Quite by accident, in 2016/17, the rabbit domestication story that had been accepted by scientists around the world for almost a century was discovered to be a complete fabrication.
“The whole thing is a house of cards,” Dr. Greger Larson said [as reported by the New York Times], acknowledging that he too has cited the story just like many other researchers. The remaining question, he said, is: “Why did we never question this? Why were we so willing to believe in this origin myth?”
Dr. Larson, who is the director of the paleo-genomics and bio-archaeology research network at the University of Oxford, made the finding (actually, more accurately, it was discovered by one of Larson’s graduate students whom Larson had asked to do some historical fact checking), which was subsequently published by Trends in Ecology and Evolution in December 2017, and which you won’t be able to read unless you live in an ivory tower (one of my pet peeves).
What astonished me as I listened to the story (hear it for yourself below), were the similarities between it and the ongoing acceptance as truth by much of the research, medical and gerontology community worldwide of the artificial construct of so-called “behavioural and psychological symptoms of dementia,“ more commonly known as “BPSD.”
In particular, the uncanny applicability of these snippets of conversation between CBC host Carol Off (CO) and guest Greger Larsen (GL) struck me:
GL: “The story…has been banging around for years but nobody ever bothered questioning [it]. And it’s in both the lay and academic literature…”
CO: “How much of that actually turns out to be true?” GL:“None of it actually.”
GL: “…and so the whole thing is just a house of cards of kind of accidentally mistaking people and translations and older references that all then got pieced together slowly. A bit like a Chinese Whispers or a game of telephone when you were a kid, and so the end result ends up being this kind of bizarre story…”
GL: “And everybody just cites this story very easily over and over again, until it becomes recognized as a kind of fact.”
GL: “So all of these little bits of it were just being kind of shelved onto a house that was being badly constructed with a lot of different materials, until you ended up with something that just made no sense whatsoever.”
GL: “…what the rabbit story really revealed to me was the degree to which we don’t question the things that fit into our worldview. So if I tell you something that you believe without me having to prove it, then you don’t require a whole lot of evidence.”
GL: “…actually there is not a single case where we have any decent evidence…”
The interview closes with this summary into which I’ve inserted in italics what I see as additional parallels to the myth of BPSD:
“These things are agglomerated onto an evolving tradition (the biomedical model). And now when we get to it, we just think ‘oh, well rabbits have always been associated with Easter (“challenging behaviours” are caused by ADRD). And actually they are a very, very recent addition (human behaviour has always been human behaviour until we had a reason to label it as aberrant). And somehow the hare (reasonable reactions to adverse circumstances) got replaced (with BPSD), even though the hare was part of it all along. So when and where that took place and what the motivations were (Ignorance, misunderstanding, good intentions and Big Pharma profit marketing?) and how it all happened (Ignorance, misunderstanding, good intentions and Big Pharma marketing?) we’ve got no idea, but that’s a project we’ve got going on (indeed we do). And what we’re going to get to the bottom of that one (damn right!).”
Here is the CBC As It Happens interview with Dr. Larson (fascinating AND funny):
In the event that you don’t see the sanity in what I say and/or you don’t share my view, I offer this:
Thanks to CBC and As It Happens for great stories and public broadcasting worth listening to.
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In the world of dementia care, and problably elsewhere for that matter, a restraint is anything that restricts or controls a person’s behaviour. Restraints may be physical, chemical, and environmental; all three were inappropriately and unecessarily used on my mother in the long-term “care” facility (aka known on this blog as Dementia Jail), in which she resided during the last four years of her life.
The staff argued that restraints were necessary for my mother’s safety and the safety of others, as well as to promote her well-being and to enhance her life. All of this was patently false. The chemical, physical and environmental restraints she endured caused her emotional, psychological and physical harm, accelerated the progression of her dementia, and ultimately contributed to her death.
That’s the big picture.
The subject of this post is one small example among many that demonstrates the impact that “hidden” physical restraints had on my mom as she lived with the Alzheimer disease in its later “stages.” I have no doubt that tens of thousands of people living with dementia in LTCFs suffer the same agitation, frustration, and anxiety my mom did day after day as a result of similar kinds of restraints.
On September 10, 2014, when I arrived for an afternoon visit, I found Mom trapped in the recliner in her room. An armchair was wedged under the recliner’s footrest to keep her from being able to either sit up or stand up. Mom was agitated and confused as a result, as you will hear in the short audio clip below.
I invite you to pay particular attention to Mom’s voice and the underlying meaning of her words.
Do you hear the fear? The confusion? The worry? The stress? The helplessness? All of it completely unnecessary. In like situations this upset would have been misidentified as being dementia-related, which sometimes would have been provoked into aggression by improperly trained and/or overwhelmed care workers, which was in turn used as an excuse to further restrain my mother by sedating her with Seroquel and Risperdal, whose side effects both include increased agitation and anxiety!
It made me furious at the time. It makes me heartsick now.
Listen (and read along with the transcript at the bottom of the post if you wish):
This was by no means an isolated incident. I took a photo of the same chair-under-the-footrest strategy still being used 18 months later:
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I found Mom restrained in one way or another virtually every day I visited her during her entire four-year stint in Dementia Jail. And she wasn’t the only one. Far from it. It’s no wonder people get agitated and aggressive and try to escape! What would you do if someone tied you to a chair and left you there for hours on end? If you are like 90% of people, you would try to escape. And if you couldn’t? How might you feel? Anxious? Afraid? Upset? I’ve written a fictionalized version of this and other scenarios through the eyes of Alzheimer Annie to help people imagine living in a LTCF from the perspective of someone living with dementia.
Ironically, the day following the occasion in the audio recording I took Mom down to the Thursday morning music session, and captured her singing one of our favourite tunes:
Transcript of the audio recording:
Susan: Hi. Mom: Well listen dear I wanted to to to to…Could you call me up like this? Susan: Yeah, I see. Mom: Well listen. I I I I… There’s something that’s not right with my… My my my.. Susan: Something that’s not right with your what Mom? Mom: Well with my my my th th th it’s it’s it’s Susan: Where Mom? Mom: Could you lift me up a little bit? I can’t I can’t I can’t get lifted up. Susan: Yeah, ‘cause they’ve put the chair, they’ve put the chair underneath the thing so that you can’t move. Mom: No, well th th th they keep doing that. I don’t know what it’s for. ‘Cause I’d like to la la la linger, with my, ya know, with my – there’s something that’s bad, that’s not good. Susan: Yes. Mom: And so so I went to wa wash my face, and the thing wasn’t right. And could I get up? Can I get up for you? And and and and I can tell you all about it. Susan: Yes.
Mom: Well it’s, it’s not good. Susan: No, I can see that. Mom: And the thing is that I need the help. Susan: Yes. Mom: You know, I need the help. I just can’t go on with it. Susan: I understand Mom. Mom: You know, so, so, so if it’s ih ih ih ih it’s definitely the the the the the song. Susan: Yeah. Mom: You know I can’t sing it with with… Susan: You can’t sing the song. Mom: No and it’s very, very… Susan: It’s very what Mom? Mom: Well it’s very— Susan: How do you feel when you can’t sing the song? Mom: Well it’s all ready, you know, it’s, it’s, it’s, it’s a bad sah song… Susan: Yeah. Mom: And so I don’t know what to do about it. Susan: Okay. Well I’m gonna— Mom: And then when I hear the the the the the the the the ohhh, it’s so songy on my song you know, and I don’t know what to do with it. Susan: Yeah. Okay. Mom: And uh, so I had to put it up, up against against your, against your…second song. Susan: Okay. Mom: And I wanted to get it fixed up. I don’t know what to do about it. Susan: Okay. I’m going to help you, okay? Mom: And uh it’s very sore. Susan: It’s very sore? Mom: Well you know it’s it’s — Susan: Where is it sore Mom? Mom: Well it’s sore on my— Susan: Can you show me? Mom: Well I’m going to sit up. Susan: Okay, but you can’t sit up because the chair is underneath your – hang on I’m going to move the chair. Mom: You can move the chair. Susan: Yeah, I’m going to move the chair so that you’re going to be able to sit up. Because the chair is underneath the thing here, and it’s to prevent you from sitting up or standing up. Mom: Uhhhh… Susan: I’m gonna help you Mom. I’m gonna help you, Mom. Okay. Mom: I’d like to put it inside the thing. Susan: Okay. Mom: But it doesn’t seem to work. Susan: Okay, do you want to stand up? Look, we’re dressed in the same colours today Mom. I’ve got blue and pink on, and you’ve got blue and pink on. That’s nice. Mom: Well I don’t know, I looked down at the at the at the… Susan: Do you wanna stand up Mom? Mom: Yeah. Susan: Okay. I’m going to help you, okay? Mom: Hmhmm. Susan: On three. Actually, you know what…
And that’s when I decided to take pictures. So I would have proof. That’s what one does in the face of one lie after another after another after another. One gets proof. So the truth eventually unfolds.
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Three years after my mother was inappropriately prescribed the antipsychotic medications risperidone and quetiapine, she began to exhibit unusual repetitive physical movements. She constantly crossed and uncrossed her legs, and she often held her hands out in front of her at chest height and fluttered her fingers as if she were playing an invisible piano.
Here’s one of the ways tardive dyskinesia manifested in my my mom (there’s another example at the end of the article):
As I had no idea what might cause her to do these things, I decided to investigate. It didn’t take me long to find that the culprit was not Alzheimer disease, as had been suggested to me. Rather, such movements are typical of a condition called dyskinesia, and more specifically tardive dyskinesia, a side effect of the use of antipsychotic medications such as haloperidol (Haldol), quetiapine (Seroquel), risperidone (Risperdal), and others. The likelihood of the condition manifesting itself increases with prolonged use, such as that of my mother.
Like me, you may never have heard of tardive dyskinesia. But you should know about it, particularly if you or someone close to you is taking, has taken or is being recommended antipsychotics. It’s important to fully understand the impact these drugs could have on you and others.
Here are 7 things you should know about tardive dyskinesia:
1 ) tardive dyskinensia may “look” like agitation, physical aggression, anxiety, nervousness, and/or be manifest in other ways that are mistaken as symptoms of and thus wrongly attributed to dementia-related diseases
2 ) you may be told that evidence of tardive dyskinesia is a “progression” of Alzheimer’s disease (ADRD) or a related dementia when in fact it is a side effect of an antipsychotic medication/ medications that has/have been prescribed (more than likely inappropriately) to someone who is living with ADRD
3 ) if someone you know who is living with dementia presents with physical behaviour(s) that include(s) repetitive gestures, twitching and/or unusual facial movements, and/or an inability to walk, the first thing to find out is if they are taking any antipsychotic medications
4 ) tardive dyskensia may manifest as soon as a person starts taking an antipsychotic medication, or according to Wikipedia, “the symptoms may appear anywhere from three months to several years after a patient begins taking antipsychotic medications (or may result from withdrawal after a patient has been taken off such medication).”
5 ) post menopausal women and women over the age of 55 are more likely to exhibit the symptoms of tardive dyskinesia
6 ) the Abnormal Involuntary Movement Scale is sometimes used to track the severity, progression and/or amelioration of tardive dyskensia in people who exhibit it
7 ) tardive dyskinesia may or may not reverse itself; it’s effects may be permanent, even if the person stops taking the medication(s) that caused it.
Here is another example of how tardive dyskinesia manifested in my mom (this video was taken on July 26, 2015; the day after the one at the start of this post):
You may have found yourself feeling agitated and anxious watching these two videos of my mom. Imagine what it would be like to experience a constant need to move and to have involuntary repetitive motions and shaking – that in itself would cause anyone to feel anxious. The irony is that Mom’s anxiety was wrongly attributed to Alzheimer’s disease, and used to justify never taking her off the medications that were one of the sources of her agitation. What a disservice to my mom!
I encourage you to look beyond the behaviours you see in the people you know who live with dementia, to identify the real causes, and then to use person-centered and relational approaches rather than inappropriate medications that should only be prescribed as a absolute last resort after everything else has been tried without success
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Lots of stuff we’re told is good for us actually isn’t.
That’s why I trust my own experience, my own eyes and my own ears, and I take the advice of “experts” and advertisers with a truckload of salt. And I sure as hell don’t trust people who stand to make huge profits from products they push at the expense of my health, welfare and well-being.
Medication has its place and I’m thankful for drugs that alleviate pain, help cure diseases, and prolong life (in a good way), etc. But I don’t believe in inappropriately marketing and inappropriately prescribing drugs that make things worse instead of better. I’ve also learned it’s unwise to believe everything everybody tells me, especially when they have lots to gain from lying.
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I advocate against the inappropriate use of antipsychotics in treating people who live with dementia because I have seen first hand the devastating impact these drugs can have.
Sadly, many dementia care partners (including myself) have been forced to turn to medication out of desperation. In order to be be able to make an informed decision, it’s important to know the side effects of the medication in question. Here’s what the Alzheimer’s Organization says:
“The decision to use an antipsychotic drug needs to be considered with extreme caution. Recent studies have shown that these drugs are associated with an increased risk of stroke and death in older adults with dementia. The FDA has labeled the drugs with a “black box” warning about this risk and a reminder that they are not approved to treat dementia symptoms.”
Geriatricians worldwide recommend against their use, saying they should only be given as a last resort after all non-pharmacological strategies have been tried. Unfortunately, too many people who live with dementia are still prescribed these drugs which are in the majority of cases both ineffective as well as harmful.
Here are some of the side effects in elderly people from haloperidol, which is marketed under the brand name Haldol:
Mom in October 2015; chemically restrained with antipsychotics, and physically restrained with a wheelchair pushed up against a table.
On December 3, 2013, a year after Mom had moved into a long-term care facility (LTCF), I sent an email to the person in legal control of my mother’s care, and the Director of Nursing of the LTCF. It read in part:
I am deeply distressed by Mom’s present condition.
I have reviewed in detail the nurses’ notes from November 2012 to September 2013. Based on the notes and my own observations of Mom’s health and behaviour, I’m convinced the well-intentioned strategy of medicating Mom more and more is not the best way forward. These are some of the deleterious effects I see:
Her balance and ability to walk are being affected, thus increasing the likelihood of falls and injury
Her quality of life is diminished
Her capacity to enjoy life is diminished
Her dignity is being compromised rather than preserved
She is gaining a great deal of weight
Her decline is being accelerated
Two simple actions will immediately alleviate the problem:
provide one-on-one care to Mom from 09:00 – 21:00 seven days per week
reduce the Seroquel and Risperdal she is being given
Moving her to the second floor to a room of her own will also help.
I would like to work together to determine what combination of medication, dosages, activities, and one-on-one care levels best meet Mom’s needs and allows her to enjoy life in whatever way she can in her remaining time, while also respecting the rights of other residents and staff.
The Director of Nursing, the on-call facility doctor to whom Mom had been assigned (and who had likely seen her for less than an hour in total over the previous year), the person in legal control of Mom’s care (plus spouse), and I met the following week.
During that meeting, I was told I didn’t understand my mother’s disease or her behaviour, that she could not have additional one-on-one care for several arbitrary reasons, that she had to be medicated for the safety of others, and that if I didn’t stop asking questions about her care we would need to find her another home.
But I knew with 100% certainty that what was happening to my mother was cruel, unnecessary and abusive, and that there was a better way. I knew it at the very core of my being.
Less than two months later, during court proceedings I had initiated to try to gain control of my mother’s care so I could get her out of ElderJail, the same doctor repeated essentially the same things he had said in our December meeting. He also told the judge that a “chemical belt” comprising the antipsychotics quetiapine (Seroquel) and risperidone (Risperdal) was “really a good thing,” because it “protects” people living with Alzheimer disease and “gives them a good quality of life.”
He didn’t clarify what he meant by “quality of life,” and he knew virtually nothing about my mother. Here she is at 10:23 on December 1, 2013, experiencing the effects of Seroquel and Risperdal — effects which lasted for four to five hours every day:
For comparative purposes, here’s Mom in the late afternoon (after that day’s meds had mostly worn off) during a music therapy session I arranged for her a few weeks later:
I lost my bid to get legal control of my mother’s care, and she was inappropriately medicated with Seroquel and Risperdal until she died in August 2016.
I repeatedly requested that the drugs be stopped; I was ignored or admonished. Worse, Mom and I were both punished for my advocacy: the time we were allowed to spend together was reduced to between 1 and 3 p.m. (when she was usually “asleep”) for the final 18 months of her life. This under threat of denying me access to her completely.
Underlying this tragedy is the “drug culture,” and broken eldercare system that prevail in the province of Quebec, where I live, and where 40 to 60% of elders in LTCFs are given antipsychotic medications, the vast majority of whom do not have a diagnosis of psychosis and are therefore being inappropriately medicated just like Mom was. The Quebec rate of prescribing antipsychotics to people with dementia in LTC is about double the 25% national average. This video shows the overall use of antipsychotics in the elderly in Quebec compared with the rest of Canada:
Having failed to get them to stop giving Mom antipsychotics, I did whatever I could to bring her happiness. I visited her every day, and created as many joyful moments for the two of us as I could, even though I felt as if I were watching her being slowly tortured to death every time I saw her.
Then, on November 30, 2017, four years after the email with which I began this piece, the Minister of Health announced the launch of an initiative in partnership with the Canadian Foundation for Healthcare improvement (CFHI) to reduce the use of antipsychotics in the Quebec’s LTCFs. The CFHI does amazing work.
On Thursday November 30, Quebec’s Minister of Health, Gaétan Barrette, announced the launch of a province-wide project to reduce the use of antipsychotics in long-term care facilities (LTCFs / CHSLD). The project will initially comprise 24 LTCFs, and will be rolled out over three years to 317 of the 400 LTCFs in the province.
“There is no doubt that there is overuse [of antipsychotics]. So, in the end, there must be a reduction,” said the minister during a media scrum.
Antipsychotics are frequently prescribed in LTCFs to “chemically restrain” residents in to avoid having to physically do so. The medications calm or sedate, and thus restrain the person “pharmacologically” rather than physically.
“Many people criticize chemical restraints,” acknowledged the minister. “I am not saying that antipsychotics will no longer be used, but we accept that there are probably too many [being prescribed]. We want to reduce them to what is really necessary.”
The project is being undertaken jointly with the Canadian Foundation for Healthcare Improvement (CFHI), which piloted it in 56 long-term care facilities in eight provinces in 2014/15 with astonishing results. Most important, said CFHI President and CEO Maureen O’Neill, is that patients recovered some of their identity: “The families of residents who are weaned from the antipsychotics they were inappropriately taking say they get back loved ones they thought they had lost forever,” she said.
The CFHI notes that people are becoming increasingly aware of the problem of over-prescription of antipsychotic medication to the elderly in long-term care. Five years ago, on average in Canada, 32% of residents of LTCFs were prescribed antipsychotics; that has since been reduced to 23.9% thanks to initiatives such as this one. In Quebec by comparison, between 40% and 60% of people aged 65 and over living in LTCFs are prescribed antipsychotics without having been diagnosed with psychosis.
I wept when I read the story in LaPresse. I wept for the pain Mom and I suffered because of ignorance, pride and greed, as well as others’ needs for power and control. But I refuse to let our experience be without meaning or purpose. I choose to believe that my advocacy played a part in generating the energy for this initiative that will positively impact tens of thousands of elderly people living with dementia in Quebec’s LTCFs in the future.
It’s too late for my mom. But it’s not too late for others.
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I thought it would be worthwhile to highlight and share the quotes:
1 ) “Anti-anxiety drugs can actually cause people to put chairs through windows, put their fist right through a window, have cuts all over their hands and they would keep going. They have to get out of there…they’re going to die anyway so they may as well do whatever they have to.”
2 ) “If you just lock doors or tie me down, what that shows is you’re committed to enforcing this ‘concentration camp’ and I fight the restraints as long and as hard as I can.”
3 ) “It’s called ‘you go with their flow’ because you can’t fix their delusion.”
6 ) “We aren’t allowed to do this [physically or chemically restrain] with any other population but we feel free to do it with dementia. You can’t do it in prisons, you can’t arbitrarily restrain somebody over a long period of time.”
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On September 10, 2014, when I arrived for an afternoon visit, I found Mom trapped in the recliner in her room. An armchair was wedged under the recliner’s footrest to keep her from being able to either sit up or stand up. Mom was agitated and confused as a result, as you will hear in the short audio clip below.
My Alzheimer's Story 