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
Photo credit: Copyright: gvictoria / 123RF Stock Photo