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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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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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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“Big pharma is going to convince an entire generation to take their toxic drugs (in huge doses) beginning early in life and potentially for life, in the hopes that it will prevent Alzheimer’s disease.
The potential profits for a strategy like this are staggering. And the potential disaster in human lives is also staggering; toxic drugs taken in large doses for decades? Even if it doesn’t kill people, it will leave them damaged somehow. And all of this using relatively the same drugs that have – as yet – failed to make a difference in Alzheimer’s!
If this isn’t the epitome of insanity, I don’t know what is. And it’s happening.”
I get the general gist,” I emailed back. “Researchers are proposing to massively increase the doses of drugs that have been shown not to work in treating Alzheimer disease thus far to see if more might be better. But a lot of the technical language is beyond me.”
“For example?” DT queried by return.
“I don’t even try to understand the various theories on plaques, tangles, taus, blah, blah, blah,” I wrote. “It’s too much for my little brain. And I don’t pay much attention to stuff related to “a cure” either, because I don’t think there’s going to be one anytime soon (i.e. not within the next 20 years). I think we need to spend a lot more time on care and doing it better.”
As an indication of the specific technical stuff that was over my head in the article, I pasted this in before I hit “reply:”
“Drug companies have erred on the side of caution in large part because antiamyloid antibodies can cause a syndrome called ARIA (Amyloid-Related Imaging Abnormalities), an inflammatory response of brain edema or microhemorrhages. Concern over this side effect has moderated as researchers accumulate more adverse event data. Most cases are asymptomatic and resolve spontaneously. New open-label extension data from the Scarlet Road and Marguerite Road trials of gantenerumab, plus a new titration model by Roche, have also increased confidence that patients will tolerate the antibody at subcutaneous doses of up to 1,200 mg.”
DT, who is known for his rather dark and satirical sense of humour, supplied a translation:
“Big pharma gets nervous when their drugs cause people’s brains to swell and bleed. They scramble back to the data to see what they can do to rescue their trillion dollar investment, all the while reassuring the public that these side effects are hard to detect and may not always be fatal. In the meantime, new experiments with people who know what drug they are taking (vs. being kept in the dark) are proving that people can take enormous doses of these drugs by under-the-skin injections without dying…. yet.”
Whoa. That’s pretty scary stuff, even for DT.
He agreed with me on a cure being unlikely, but hopes we may turn away from pharmaceuticals and more toward dietary, lifestyle, and other preventive measures. For those who get Alzheimer or a related dementia despite their best holistic efforts, his fingers are crossed for compassion-centred care.
“But stopping the BigPharma machine is going to be extremely difficult,” he cautioned. “Because now ANYONE who’s afraid of getting dementia will be persuaded to take these drugs, thanks to manufacturers’ capacity to use media and marketing models that prey on our fears. It’s really sad.”
But not inevitable! This is one more reason to turn around the negative narrative and stigma associated with Alzheimer disease and related dementias, and to find ways to live with them before we die from fear of them.
It’s not every day that a non-academic, non-researcher, “nobody” without a whole bunch of letters after her name gets an article published in a professional journal. When it happens to you, well, it’s something to celebrate. At least it is when that you happens to be ME! And especially when the subject matter impacts millions of people who live with dementia around the world.
The link has been shared on twitter, Facebook and LinkedIn, generating interest and views around the world including in Australia, Canada, Ireland, United Kingdom, United States, and Spain. Yippppeee!
According to Altmetric, the article has a high attention score and is in the top 25% of all research outputs scored by the online tool. More yipppeees! A little street cred goes a long way when you’re a one-woman band marching to a different drummer as the systemic symphony plays a BigPharma tune.
The article may be viewed and downloaded at this link for free until April 15, after which it will be pay per view or via subscription to JAMDA. I invite you to take a look, and thank you for your ongoing support of my work and of MyAlzaheimersStory.com
The United States’ Medicare.gov website includes a comprehensive section called Nursing Home Compare, which contains quality of care and staffing information for all 15,600+ Medicare- and Medicaid-participating nursing homes in the country.
Among a wealth of other information, Nursing Home Compare offers data on fifteen quality measures from the “percentage of long-stay residents with a urinary tract infection,” to the “percentage of long-stay high-risk residents with pressure ulcers” for all 15,600+ facilities each month and averaged for the previous year. It also includes “the percentage of long-stay residents who received an antipsychotic.” The data on these quality measures, in addition to other ways of rating long-term care facilities (LTCFs), is updated monthly and is downloadable. However, because of the volume of information provided, it’s challenging to wade through the zip file downloads, particularly for those interested in comparing one particular parameter such as the use of antipsychotics, which is an important indicator of the overall quality of care being provided in any given facility.
To help family members, dementia care advocates and consultants choose care facilities wisely, I downloaded the Nursing Home Compare quality measure zip file, and, using excel, selected and sorted the data relevant only to the “the percentage of long-stay residents who received an antipsychotic,” to produce two easy-reference lists.
In both lists, the LTCFs are sorted alphabetically by state; then either 1) alphabetically by the name of the LTCF, or 2) in descending order based on the last four-quarter average of “the percentage of residents who received an antipsychotic” last four-quarter average as of October 2016.
Here are download links to the lists, which are excel (.xlsx) files:
The percentage of residents on antipsychotics reflects the standards of care in any given LTCF as well as the facility’s approach and philosophy with respect to dementia care (i.e. glass half full or half empty?). Faced with the heart-wrenching necessity of placing a loved one who lives with dementia in a LTCF, I believe most families would choose to place them, if possible, where they would be respected and offered the best achievable quality of life. These lists are one tool available to help US residents choose wisely. This type of information should be publicly available everywhere, just as it is in the US, so that families are better equipped to make informed decisions about dementia care options.
A cautionary note: the Nursing Home Compare data is self-reported by the facilities
Why do medical practitioners and family members balk at taking people who live with dementia off these dangerous and largely ineffective drugs? A variety of factors underlie their resistance.
In this clip, Kaye Phillips, Senior Director at the CFHI, and leader of the highly successful project explains two of the reasons families and medical practitioners may want to keep people who live with dementia on antipsychotic medication rather than using non-pharmacological approaches to address expressive behaviour.
In June 2015, the Canadian Foundation for Healthcare Improvement released the results of a pan-Canadian collaborative project aimed at reducing the use of antipsychotic medication in long-term care facilities for the elderly.
The project achieved astonishing results, which I documented here. Shortly after the results were released, I interviewed Kaye Phillips, Senior Director at the CFHI, and leader of the highly successful project. During that interview I asked her a simple question; she responded with a clear evidence-based answer.
I advocate against the practice of inappropriately prescribing antipsychotic medications to people who live with dementia; I’ve done so since December 2012. During that time, I’ve learned a great deal about Alzheimer’s disease and other forms of dementia. I’ve connected with dementia care advocates globally, including those listed at the end of this post.
I’ve also written hundreds of articles, given a dozen webinars, lectured at a local college, and conducted numerous community workshops. Although still a relatively “young” blog, MyAlzheimersStory.com, is followed by scores of people worldwide, its pages get viewed tens of thousands of times each month, and its readership continues to grow.
All of this is hugely rewarding and affirming, but there’s a sad and dark side to my work. Closer to home, I have been vilified, humiliated, slandered, ridiculed and threatened for advocating for person-centered care and speaking out against the use of antipsychotic medication in treating persons living with dementia.
“She’s crazy,” they say.
Maybe I am crazy. But if I am, so are all the people listed at the end of this article, and so is the Canadian Foundation for Healthcare Improvement.
The Foundation’s evidence-based, pan-Canadian initiative to reduce the inappropriate use of antipsychotic medication among seniors in long-term care facilities, demonstrates what I and others have been saying for a long time. Finally, we are all being vindicated and validated.
The Foundation identified five specific problems with antipsychotic drugs:
the associated complications from overuse are even more expensive
The Foundation’s initiative, implemented in 56 long-term care facilities across seven Canadian provinces resulted in reducing or discontinuing antipsychotic use in 54 per cent of the 416 residents who participated in the study over the course of a year.
Fifteen Foundation-supported teams established “more patient-centred, team-based and data driven approaches to care” in the 56 facilities. By the end of the project antipsychotic use was completely eliminated in 36 per cent of the participants (150 people); it was reduced in another 18 per cent (75 people).
Reducing the use of antipsychotics also resulted in:
fewer falls (down 20 per cent)
less verbally abusive behaviour (down 33 per cent)
less physically abusive behaviour (down 28 per cent)
less socially inappropriate behaviour (down 26 per cent)
less resistance to care (down 22 per cent)
Most important of all, the residents experienced a better quality of life, and their families “got their loved ones back.”
The Canadian Foundation for Healthcare Improvement’s news release outlined “a troubling discrepancy across jurisdictions concerning the use of antipsychotics in long-term care (LTC) without a diagnosis of psychosis.” In other words, people who live with dementia but who have not been diagnosed with psychosis are being given drugs that are designed for people who have been diagnosed with psychosis.
There is worldwide consensus in the field of geriatric medicine that antipsychotic medication should be the last resort in treating responsive behaviour in people who live with dementia.
According to the Canadian Foundation for Healthcare Improvement’s report, only six Canadian provinces and territories publicly report on potentially inappropriate use of antipsychotics in LTC. Usage ranges from a low of 21.1 per cent of people in Alberta LTC homes to nearly double that (38.2 per cent) in Newfoundland.
Québec, the province in which I reside, is one of those for which such data is not available.
I have seen the devastation and suffering that the inappropriate use of antipsychotics causes people with dementia and their families.I have experienced it myself.
I hope this excellent work by the Canadian Foundation for Healthcare Improvement will spark a tsunami of change in the way we care for people who live with dementia in Canada, and most particularly in Quebec.
My Alzheimer's Story 