Rethinking Dementia: Normal Human Responses #10

I really love this quote, and felt it quite relevant to this blog series about the need to #BanBPSD.

Fronteirs in Neurology state: “Behavioral and psychological symptoms of dementia (BPSD), also known as neuropsychiatric symptoms, represent a heterogeneous group of non-cognitive symptoms and behaviors occurring in subjects with dementia.”

Thankfully, at least in my opinion, there is a growing number of experts who believe it has done harm, as it has pathologised many normal human responses, and we want it banned. Oh, and on reading the description above, I definitely disliked being referred to as a subject!

Apart from a few ‘symptoms’ listed in the BPSD guidelines, for example, hallucinations, depression and delusions, most have nothing to do with the pathology of dementia.

So why not call them what they are? Some are very normal human responses or reactions or responses to something, and a few are psychiatric symptoms or disorders.

From my perspective, and my learnings and experience, it seems the time really is now that we separate what are the normal human responses from what is pathology due to dementia, and #BanBPSD forever.

The Albert Einstein quote above says it all…

Yet, as a ‘modern’ and supposedly ‘educated’ and ‘enlightened’ society, we too often get hung up on the need for science, or evidence based research, before we will do or even try anything when it is related to medicine.

Ironically, there is little or no ‘evidence’ that most of the symptoms listed in the BPSD guidelines are actually due to the pathology of dementia, although since they were developed, the health care professionals have taken to it like ducks to water!

Humans are a weird bunch indeed!

When I tried to get rehabilitation for dementia into the Australian National Clinical Guidelines, I was told there was no real evidence for it, even though I could and did cite dozens of research articles supporting my claim. Now, many of the same academics and clinicians who argued strongly against rehabilitation for people with dementia are writing about it, and even teaching it…

My own clinical neurophysiotherapist, Professor James McLoughlin, also an academic at Flinders University, was the only person who supported me from the sidelines back then, but unfortunately he was not on the committee developing the national dementia guidelines.

 

4 thoughts on “Rethinking Dementia: Normal Human Responses #10

  1. It’s time we challenge the stigmatising and negative behavioural paradigm used to unfairly judge and pigeon hole people living with dementia.
    We must pave the foundations for an entire culture change and become the catalyst to the shift required in publicising to the world that we are now rethinking dementia and are advocating zero tolerate towards the subjective assumptions made about dementia and behaviour.
    It is critical that society and the medical profession cease judging and segregating people living with dementia in this manner.

    Please see 1 of my supportive articles to further elaborate this ethos and vision:

    https://www.linkedin.com/pulse/challenging-behavioural-paradigm-right-express-yourself-bisiani

    I shall end with a quote from my article:

    “These depictions intentionally describe behavioural expression in a manner clearly proclaiming that ‘only’ people living with dementia exhibit behaviour, and misleadingly, making an untrue declaration, that behaviour, psychiatric conditions and dementia are co-joined.
    Aligning dementia to mental health through a classification such as BPSD, is an error in judgement related to categorisation. It appears this has arisen because of uncertainty within a health framework founded purely on symptoms that only ‘seem’ to have at times, ‘some’ commonality.
    It is essential we advocate for dementia to be recategorized within a disability paradigm now that we are more knowledgeable.
    The past may have been mental health, but the future requires reform to adequately represent the experience of people living with dementia.”

    Like

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