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
See also: 3 books and 1 loving video that will change the way you see Alzheimer’s / dementia
Photo credit: Copyright: ginasanders / 123RF Stock Photo
If you like what you’ve read, why not subscribe to my free updates?
My Alzheimer's Story 
The above is an excellent start to a very real problem.
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?????
By using these medications we are creating a situation where a person deteriorates faster than they would if treated with the care and support they deserve, and enabled to live their life. Again, neglect and reportable abuse in my view.
Otherwise people with dementia may continue to be dehumanized, to the stage where they continue to be stripped of and lose their personhood, rights and dignity, possibly create dependence on the negative effects of medication and live the remainder of their days in a state of sadness and despair.
This my friends is the disgrace of our industry.
LikeLike
Yes, and +1 to all of the above Leah ❤
LikeLike
Thanks Amazingsusan – BTW you ARE amazing.
Cheers and smiles.
L.
LikeLike
Excellent piece, Susan, and I love the visual depiction of factors leading to overuse of antipsychotics. I’m going to share this important post on my advocacy page. Thanks for all of your wonderful work!
LikeLike
Thanks Ann. I have a lot of material, ideas and perspectives to share on all of the factors, and I intend to do so over time. The “framework” may evolve as I continue to explore and write, but I think this is a good start. I look forward to your support and input as the process continues, and I thank you also for your great work 🙂
LikeLike
Mum is on this awful drug(4mg, 2years) . It doesn’t help at all ,but trying to cut her down is a nightmare she was on 5mg, been on 4mg for about 5mths. Side effects are worse than the anxiety and aggitation she was given them for in the first place ( fried her brain)
LikeLike
D. Jones, I’m so sorry to hear this. The best strategy I believe is to not start people on these medications to begin with – doing so just creates a slippery slope. That’s what happened with my mom. It’s hard to comment further without knowing the circumstances in which you and your mom find yourselves. Everyone’s case is unique, and most are extraordinary complicated. There are no “easy” solutions. That said, one thing is sure and that is that the disease evolves and that circumstances change, and so there are always opportunities to change “treatments” and medication protocols to address that evolution.
LikeLike