As a result of my experiences as a care partner to someone living with dementia, I have become a vocal advocate for a behavioural/experiential approach to dementia care, which is embraced by a growing number of dementia care pioneers worldwide.
Like these pioneers, some of whom I’ve listed with links at the end of this post, I also advocate against the inappropriate use of antipsychotic medications to “treat” behaviours that are for the most part NOT caused by dementia, but instead by the environments and situations in which we place people who live with dementia as well as the ways in which we interact with them.
The behaviours that are often labeled “difficult” or “problematic” in people who live with dementia would be considered normal responses in anyone else. Geriatricians, ethical medical professionals and health organizations worldwide are calling for drastic reductions in the use of antipsychotic medications that sedate elderly people with dementia into compliance for the sake of convenience and cost reduction.
These drugs are dangerous. They are largely ineffective in treating dementia-related responsive behaviour. Their use is not recommended in elderly people with dementia. They produce debilitating side effects, and in some cases premature death. There are better, more effective, less risky, proven ways to achieve the desired results.
The inappropriate use of these drugs can be reduced; it’s been proven over and over. When care staff are trained in best practices, usage rates fall and everyone is better off, So why are these medications still so widely used? There is no simple answer.
Rather, there is a cluster of interrelated factors, which create barriers and negatively impact efforts to move away from a biomedical model of care toward one that is person-centered and humane. Big pharma is a major one, our drug culture, particularly in certain jurisdictions such as my home province Quebec, Canada, is another. But there are more.
We need to address all of these factors to effect change. With that in mind, I’ve created a visual framework for thinking about, and taking action on the issue. I intend to use this framework to organize my thoughts, research, writing and activism moving forward, and I hope it might also be useful to other thinkers, researchers, dementia care advocates and care partners as together we work toward better care for people who live with dementia.
A short list of amazing dementia care pioneers:
- Dr. Allen Power
- Andy Tysoe
- Dr. Bill Thomas
- Dr. Helen Kales
- Judy Berry
- Kate Swaffer
- Naomi Feil
- Philippe Voyer
- Teepa Snow
Photo credit: Copyright: ginasanders / 123RF Stock Photo
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