Rethinking Dementia: Normal Human Responses #9

In an effort to keep the #BanBPSD series going, I want to highlight a comment written by Peter Gordon from Scotland, who has become a dear friend, and is also a psychiatrist in Scotland who has been advocating for improved practice.

He advocates also for a more transparent medical industry for many years, and I will write an article specifically about that topic in this series soon. Peter is also supportive of our collective efforts to ban BPSD, but like me, also believes in the value of medication, including antipsychotics, when dispensed appropriately.

Peter commented on one of my blogs recently:

“My view is that medical interventions, such as psychiatric medications, are generally given with good intentions. Sometimes psychiatric medications are necessary to help lessen suffering. However I am of the certain view that psychiatric medications are grossly over-prescribed.

In the case of those living with dementia why has the Pharmaceutical Industry been one of the primary “stakeholders” in “educating” the caring profession? “BPSD” was a term coined by industry rather than reality, let alone science. This is why I want to see “BPSD” go into the dustbin. Alas, at least in the UK, my profession continues to receive significant amounts of “education” from vested interests.”

Alas, this is true all over the world, and the fact that the term BPSD was ‘invented’ (!!) in the late 1990s by the International Psychogeriatric Association (IPA), and the original guidelines and education of health care professionals for BPSD were funded by them. There really is big money in dementia!

As Susan Macaulay wroteThe term “behavioural and psychological symptoms of dementia” (BPSD) is a harmful artificial construct used to inappropriately describe reasonable responses to adverse conditions and circumstances (RRACC) when such responses are expressed by people living with dementia (PLWD).

Leah Bisiani wrote an interesting article in 2017, Turning the world on its axis – only the perspective of the person living with dementia can illuminate our viewpoint. She articulates well on topics such as stigma and labels, and said:

“Subjective terminology such as assuming a person “suffers”, is a ‘patient”, “loses oneself” is a “victim” or is “afflicted”, are terms that are demeaning and derogatory, immediately providing a dehumanising attitude based on “our” bigoted assumptions and personal views. 

As do the terms “challenging behaviour”, “behaviours of concern”, “changed behaviour”, and the most invalidating of all, “BPSD”, (behavioural and psychological symptoms of dementia). 

These terms are prejudicial labels, and when we intentionally describe behavioural expression in this discriminating manner, we are conceitedly proclaiming that ‘only’ people living with dementia exhibit behaviour. Seriously??? 

Furthermore, we are developing a false mindset that states dementia is recognized as only part of the mental health paradigm, thus erroneously categorising dementia as a psychological condition instead of a disability. Every human being who exists in this world, who may or may not live life with or without psychological or cognitive changes, all exhibit a plethora of stress related behaviours and responses. 

Cognitively aware individuals display behavioural expression just as consistently, and often more dramatically, than people living with dementia. What establishes ‘our’ behavioural expression as considerably worse, is the ‘intent’ behind our stress related responses to everyday life occurrences. We have a definite insight into behaving in the very manner we pigeonhole and berate people living with dementia for. 

How grossly unfair and disgustingly arrogant of us.”

Leah also published a relevant article on her LinkedIn page, Challenging the behavioural paradigm – the right to express yourself, worth reading.

Sonya Barsness wrote an excellent article called the Behavioral and Psychological Symptoms of Sonya, on 

“Hi. My name is Sonya and I have behavioral and psychological symptoms of Sonya (BPSS). Yes, it is true. You see, sometimes when I am doing something I don’t want to do, I get agitated. And then there are the times when I am tired or not interested and I have apathy. The other day I was combative when my husband tried to feed me a strawberry and I pushed his hand away (I really do not like being fed by others, although I really like strawberries). I irritably yelled at my computer for several minutes this morning when I read the headlines. I am anxious any time I have to drive in this heavily congested area. Unfortunately, I also am paranoid. I KNOW that my husband took the car keys and hid them from me.

Maybe you are saying, “Sonya, what are you talking about? BPSS? Why can’t you just say you are angry or anxious? Why the labels? You are so weird.”

Wow, Sonya was clearly so ‘challenging’, her husband should have requested that her doctor at least sedate her, to calm her down!

Finally, an article I wrote called Who’s got the Challenging Behaviours?, once again challenges this paradigm, and discusses the reality we all exhibit normal human responses to most things on a daily basis!

9 thoughts on “Rethinking Dementia: Normal Human Responses #9

  1. Thank you so much Kate for quoting me and providing links to my work.
    I feel very proud that you have done so my friend.
    It is such a grand privilege working with you on changing the face of dementia and encouraging the world to rethink living with dementia without the judgement and negative stereotypical labels, we have so callously thrown your way.
    We must start listening to people living with dementia as the true experts and only then can we move forward, together as one, regardless of each others differences.
    In a perfect world!
    Warriors unite!!!!!!!
    #BanBPSD
    Love you.xx

    Like

  2. Thanks Kate for the links to great reading. Leah has made me take responsibility to adjust my own attitude, thoughts and behaviour so I can be able to effectively met mums needs. To value and respect her individualness, personhood and uniqueness, so I can support mum to uphold the place she deserves and holds within the world, and maximize her quality of life. I look forward to spending time with mum today with new purpose and mission. X ness

    Like

    • Thank you Vanessa for such kind sentiments.
      I am delighted that Kate and my words have inspired you so much.
      This may be a different experience to what you expected at this time of your life with your mum,(and for her too I am sure), but that doesn’t mean it cannot be a time that is just as fulfilling, wonderful, exciting and joyful as any other part of life.
      Its just all about perspective.
      Love to both you and your mum.
      Thanks to Kate for being such an incredible leader.
      She is my hero.
      xx

      Like

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