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:
- they are not the best strategy for managing dementia
- they are associated with cognitive decline (i.e. they worsen dementia)
- they can cause serious harm, including premature death
- the prescriptions are expensive
- 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.
However, given that the rate of prescription of antipsychotic medication to the elderly in Quebec is three times that of Alberta, one can only imagine the frightening amounts of unnecessary antipsychotics that are currently being given to elderly Quebeckers with dementia in long-term care facilities. Tellingly, and tragically, no Quebec facilities participated in theCanadian Foundation for Healthcare Improvement’s study.
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.
Our elders deserve to be treated with dignity and respect, not to be abused with chemical restraints.
A short list of amazing dementia care pioneers:
- Dr. Allen Power
- Andy Tysoe
- Dr. Bill Thomas
- Dr. Eilon Caspi
- Dr. Helen Kales
- Judy Berry
- Professor June Andrews
- Kate Swaffer
- Leah Bisiani
- Naomi Feil
- Philippe Voyer
- Dr. Shibley Rahman
- Teepa Snow
See also: 3 books and 1 loving video that will change the way you see Alzheimer’s / dementia
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25 thoughts on “vindicated and validated”
I fully support any organisation that works towards the reduction of usage of mind controlling drugs. Coming from a family with a history of mental illness I have witnessed the effects of these drugs, both on the individual and the family, since my childhood. Whilst in some cases they can be valuable and help a person obtain a life balance that might otherwise not be possible, they should not be used as a convenience option for caregivers or care institutions. I personally feel that we turn to medication far too frequently across the board in modern day healthcare, the drug companies have a hold on our governments’ policies and we need to take back control of our choices.
Lynn, why can’t you be here? Or me there? I miss you! You’ve been my angel since BEFORE the start.
Further, you are an expert in the area of care partnering, and I appreciate your thoughtful comments on this issue.
❤ you as always ❤
Ps. I fixed the link – woohoo – my website was incorrectly spelled- by me – eeeek!!!!!!!
I have now corrected it – thanks Susan.xx
Fo convenience, never!!! I stand with you!!!
Thanks Rebecca ❤ You too have been with me from the start. Thanks for your ongoing support.
I did leave this another time my friend but it was when we were having probs with my submissions so here goes:
This is very true and an area that is seriously neglected majority of the time, I believe.
In relation to the predominance of psychotropic medication, it is we who must be seriously reflected upon how to stop the abuse of these drugs. We are the ones who instigated it, so can just as easily reverse it.
Majority of persons living with dementia do not actually need these medications, and over medicating people because you do not understand them is considered inappropriate and unacceptable behavior management.
How dare we consider this a humane and caring attitude? Would we drug our children for having a hissy fit down the street? Do we drug our dogs for barking in the yard?
I question this very disheartening and destructive attitude of drugging human beings, who are in reality, most probably just trying to communicate to us in the very best way they can that their needs are not being met, they are in pain, they are frustrated, or living a life of core despair because those in the supposedly care giving industry lack the empathy and compassion to enter their reality with them and understand how eternally difficult this must be.
May I also suggest, that the prevalence of behavioral expression is most often related to ‘our’ behavior and judgmental attitudes towards people living with dementia. It is time we looked at ourselves and realized that we are often the triggers, and if we adjusted ourselves and learned to be a little more flexible in our approach, then majority of behavioral expression is eradicated. It is time to take our head out of the sand and move forward from the old archaic care philosophies.
All persons have the right to speak up about their frustrations, and communicate this in the best and only way they know how, whether verbally or exhibiting behaviors that communicate this. These types of anxiety related behaviors will occur frequently if caregivers continue to disregard and neglect the differing reality of the people they care for.
Furthermore, and importantly, it must always be considered preferable to reduce the use psychotropic medications because they are so destructive and harmful to quality of life. This is a no brainer!
Sitting in an armchair for the remainder of the journey, drooling is not improving a person’s life quality – this is neglect pure and simple!!!!! This overuse of medication is considered elder abuse.
Majority of people living with dementia do not and never will benefit from this type of chemical intervention. This highlights the significance of exploring alternate non pharmacological strategies, including person centered care approaches, validation and an in depth understanding of the individual specific needs of the person being cared for.
The management of behavioral expression in people living with dementia has for too long relied essentially on medications that sedate. Other additional and undesirable effects place that person at significant risk because of poor mobility, increased risk of falls and serious fall related injury, decreased cognition and evident destruction of life quality. And then we enter the area everyone also then complains loudly about – acute delirium and depression!!!!!!!
What are we doing people?????
Ps. Susan I am still working on your piece for behavioral expression. I promise I have not forgotten you.
PPS. As always – love your work.
Leah, you are spot on in everything you say, and I particularly appreciate these lines:
“May I also suggest, that the prevalence of behavioral expression is most often related to ‘our’ behavior and judgmental attitudes towards people living with dementia. It is time we looked at ourselves and realized that we are often the triggers, and if we adjusted ourselves and learned to be a little more flexible in our approach, then majority of behavioral expression is eradicated. It is time to take our head out of the sand and move forward from the old archaic care philosophies.”
Good to know you’re working on the article, there’s no rush 🙂 Love your work too, I’m adding you to my list of worldwide advocacy connections 🙂
Thank you Susan for always being such a wonderful support and advocate to those who live with dementia, but also professionals like myself who are doing everything we can to change the old archaic philosophies of care.
I really appreciate you placing me on your list of experts – it is most kind and thoughtful of you.
Lorraine I appreciate your comments too, as my passion has been my entire life work.
Power in numbers I say, and the more of us on board, the more of us who can stand up and fight for what is right.
For all those people who live with dementia, like my dear friend Kate Swaffer, you deserve no less than the best we can give.
Until my last breath I shall do everything I can to give you that voice and to create change on the scale I dream of.
The sad reality is that we DO drug our children when they have hissy fits, calling it ADHD or something similar, and we DO drug our pets for barking in the yard, with mild sedatives and/or bark collars. In other words, this problem is more systemic than just seniors in institutions.
Thanks, Leah, for calling it what it is – judgemental, reactive and extremely debilitating for the individual who is simply doing his or her best to survive. I really enjoyed your passionate perspective.
“…this problem is more systemic than just seniors in institutions.”
Yep. It’s pervasive as you say @Lorrie 😦
Right on Susan for your brave and courageous work on behalf of a population of people who are unable to advocate for themselves!
Thanks Heidi. I appreciate your ongoing support – you’ve been with me from the very start! Advocates also need advocates and you are a great one. Thanks again.
As you know I have been advocating for practitioners to STOP using antipsychyotics to ‘manage behaviours’ since 2009! Slowly but surely, we will get there.
After the one CONTRAINDICATION to prescribing them according to the BLACK BOX warning, is dementia!!
I wrote AGAIN about it here last year
Keep up the VIP campaigning to stop this form of restraint against people with dementia. Together WE WILL make change.
Kate, yes I know you have been advocating long and hard and on so many fronts. Systems prefer the status quo, and it’s hard to create change, but you are right: we will get there. And this kind of work is best done collaboratively as you also pointed out. I reread the article at the link, thanks for posting it. Keep up the good work! Susan
I too shall contact Kate.
Dear Kate, Is there a way DAI can have an official extension to the organisation for reputable, passionate and genuine advocates not living with dementia? That way DAI runs the group, authorises publications but it’s a collaboration and all information collected, disseminated is DAI ownership. I feel it would be even more powerful. Would love to hear if anyone else shares this idea, or why not. love from Marija x
Marija, I think it’s a great idea. I also think it would be important to have a clear understanding of what the goals would be, who would do the work, what work they would do, etc. There’s no point to creating more groups and channels just for the sake of groups and channels. Somebody has to to the work, whatever the work is agreed to be 🙂 #justsaying
Personally, I simply do not have the time to do anything more unless I let something else go, and at the moment I’m not willing to let go of anything I’ve already got going 🙂
Yes, I agree that the overuse of Psychotropic Drugs as a means to control behavior, and make our seniors “COMPLIANT” in their environment should be punished as a criminal offense of Elder Abuse!
Can you imagine the outrage that would occur, media coverage given, criminal charges filed and prosecuted if animals in the US are subjected to the kind of abuse many of our seniors live with every single day. Our seniors have None of The Kind of Support that creates the outrage, media coverage and prosecutions necessary to Force Providers who operate severely understaffed facilities that provide little to none of the critical specialized dementia training and choose instead to MEDICATE our seniors into “compliance”!
I would like suggestions from others on how to convince and motivate family members, that They CAN DEMAND THAT FACILITIES MEET THE BASIC HUMAN RIGHTS OF THEIR LOVED ONES!!
I challenge All Of US who are currently involved in some way trying to fight these very issues of
Overuse of Psychotropic Medications and the Shameful & Abhorrent Treatment of many Seniors with Dementia to find a way to band together and MAKE THE NECESSARY NOISE, to bring these issues of ELDER ABUSE that is currently rampant in many places. Inappropriate Overmedication of Behavior Manifestations (which is only an attempt at communication of a need) , Inadequate Staffing and Lack of Critical Dementia Training and Ongoing Staff Support is the main reason our seniors are being DENIED THEIR HUMAN RIGHTS. Being treated with DIGNITY, and providing CHOICE, and support necessary to maintain the HIGHEST QUALITY OF LIFE POSSIBLE right through our Natural Death ARE OUR RIGHTS!
We need to form a sort of powerful PETA like organization, maybe SETSD. (Supporters o Ethical Treatment of Seniors with Dementia) ??? You guys can do better than I with names, but I imagine you know what I’m getting at. Power in Numbers!
I just finished a presentation on “Prevention Vs Treatment” for Managing Dementia Related Behavior.
Compassion, Validation, and Emotional Support are far superior to treatments that in most cases just mask the real Issues behind Dementia Related Behavior!
Most Treatments and Medications used to manage behavior rob us of our Respect, Dignity and Ability to Experients Joy!
Wow Judy! What a passionate plea and yes, you are right, we need to TAKE ACTION.
It seems many of us are doing so in individual ways and have not found a way to maximize our collective voices as Al Power suggested in this post: “We have met the enemy and he is us.”
I know you are doing excellent consultative work as well, and I recommend your services which may be accessed here: http://www.dementiaspecialistconsulting.com/
I’m going to put my thinking cap on, and let’s see if we can have some king of pow-wow with the others…
As always, your words are powerful I will take this opportunity to ask Kate Swaffer : Is there a way DAI can have an official extension to the organisation for reputable, passionate and genuine advocates not living with dementia? That way DAI runs the group, authorises publications but it’s a collaboration and all information collected, disseminated is DAI ownership. I feel it would be even more powerful. Would love to hear if anyone else shares this idea, or why not. I haven’t forgotten my part either Susan x
I have no idea why sometimes I am anonymous ??? Marija
Interesting idea… And I have no idea why you are anonymous other than when you make your comment, it usually gives a choice of who you want to comment as, maybe you are just leaving it at the default which maybe be “anonymous.”
Powerful article. I am 100% behind this effort.
Thanks and the more people are behind it, the better chance we have to create change in the way we care for people with dementia.