Rethinking Dementia: Normal Human Responses #1

/ September 2, 2018

Rethinking Dementia Care by Banning BPSD

For World Alzheimer’s Month this year, #WAM2018, I will be focusing on why I, and a growing number of others believe we need to Ban BPSD (the Behavioural and Psychological Symptoms of Dementia). Six people, myself included wrote a Letter to the Editor of the Australian Journal of Dementia Care, published recently.

I’ll also highlight the growing group of others who agree; academics, dementia professionals, people with dementia and even a few care partners who have been positive about, or even joined this ‘campaign’. They include Dr Al Power, Daniela Greenwood, Susan Macaulay, Howard Gordon, Liz Lester, Leah Bisiani, Sonya Barsness, and others.

Tomorrow, I will continue my series on why many of us believe we need to ban this term completely, by highlighting some of the blogs or articles written by members of this campaign, starting tomorrow with an Open Letter published by Susan Macaulay on this topic. Follow the link now to read it in full now, or wait for my response to it tomorrow.

I’ve believed this paradigm to be harmful and wrong for many years, have written about it many times, given presentations on it. Not that many years ago, I was regularly told that those of us who believe this, are ALL wrong, but I have continued to believe we are right. Anything funded by pharmaceutical companies is a red alert, and anything which has a Black Box warning against it being used for people with dementia (sadly, only in some countries), is also a red alert.

The term BPSD has provided a medical rationale to over-medicate and restrain people with dementia. (Kate Swaffer 2018)

To say I honestly believe, with every cell in my body, that the notion of BPSD and the labels within it are due to the pathology of dementia is not only wrong,  it has iunintentionally caused people worse care. I’m sure the term itself is doing harm, to the point it should be removed completely from all dementia policies, programs and care plans. Here are a few simple examples of why:

  • Labeling and medicalising normal human responses to dementia is harmful, and wrong.
  • Labeling and medicalising normal human responses to being segregated is wrong; this is also a breach of our most basic human right under the CRPD.
  • Labeling and medicalising normal human responses to being physically restrained is wrong; even people without dementia do not want to be locked up, and this is also a breach of our most basic human right under the CRPD.
  • Labeling and medicalising normal human responses to chemical forms of restraint is wrong.
  • Labeling and medicalising normal human responses to feeling lonely and wanting someone to take notice of you as ‘attention seeking” or ‘a screamer” is wrong.
  • Labeling and medicalising normal human response to the need to walk as wandering is wrong; everyone needs and wants to walk!
  • Labeling and medicalising normal human responses to being ignored is wrong.
  • Labeling and medicalising normal human responses when someone is unable to communicate their needs or wants is wrong.
  • Labeling and medicalising normal human responses to untreated pain is wrong.
  • Labeling and medicalising normal human responses to being forced to live in an institution is wrong; we know institutional care ensures poor care, and out of choise, almost no one wants to live in one.
  • Labeling and medicalising normal human responses to being forced to eat with a group of strangers is wrong; when I go to a restaurant, I sit with my family or friends!
  • Labeling and medicalising normal human responses to being forced to do an activity you don’t like, or don’t want to do, is wrong.
  • Labeling and medicalising normal human responses to being forced to eat food that is spiritually or culturally inappropriate for a person, is harmful.
  • Labeling and medicalising normal human responses to not liking the food you are served is also wrong.

After much thought, and more reading these last few years, and especially the last few weeks, I also don’t believe we should label what are normal responses to dementia (or poor care) as ‘unmet needs’. In fact, I feel this term may actually also continue the medicalisation and pathologising of dementia. But more on that on another day this month…

Whoever first said the Earth was round was not believed either, so being told we are wrong is not a major issue!  We may be wrong, and that is what having an open mind is all about. Hopefully the academics, clinicians and health care staff who are so invested in it being right, will ultimately be willing to at least consider it as an option…

Ps. Check out the World Alzheimer’s Month daily #Hello my name is blog series Dementia Alliance International

 

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42 thoughts on “Rethinking Dementia: Normal Human Responses #1”

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  6. Canada and the USA are so overloaded with patients as a result they are-forced to employ untrained and incompetent staff. This leads to an overdose of restraint medicine to quiet patients so employees can handle the case load volume. The problem as I see it is nursing homes must be re-licensed with a care syllabus, State sponsored protocol with constant inspection.and cite violations to be corrected.. I am reluctant to keep ringing the same bell, but I am a strong advocate for home care with specialized critical care nurses attending the bedridden eliminating the problem raised by Susan. My suggestion will benefit patients as this nurse would monitor biomarkers long needed to offer pain free comfort, a civilized approach..

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  7. Very proud that we have come together as a force to be reckoned with Kate, joining with other formidable and global leaders to create such a powerful voice.
    We, the #BanBPSD Warriors, are finally making the inroads required to challenge the stigmatising and negative behavioural paradigm used to unfairly judge and pigeon hole people living with dementia.
    This first publication in the AJDC shall 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, behaviour and the over medicating/chemical restraint of people who live with dementia.
    It is critical that society and the medical profession cease judging and segregating people living with dementia in this manner.

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  8. Pingback: 20 compelling reasons to rethink the way we label and medicalise the behaviour of people who live with dementia #BanBPSD

  9. Thank you for this Kate. Appalled that reacting to pain, or to the need to take a walk, is labelled as misbehaviour. All the very best in your battle to ban BPSD xx

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  11. Kate, did you mean to say “UNhelpful” in this sentence: “…that the notion of BPSD as a helpful term, and the labels within it being due to the pathology of dementia, is harmful, is an understatement.” I found the sentence a bit confusing and wasn’t able to figure it out…

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  12. Great post Kate. And I fully agree that “Anything funded by pharmaceutical companies is a red alert,” and I hope all organizations dedicated to improving the lives of people with dementia will immediately stop accepting funding from pharmaceutical companies.

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  14. Dear Kate,
    As you know I am a psychiatrist for older adults in NHS Scotland.

    I fully agree that we need to Ban BPSD (the Behavioural and Psychological Symptoms of Dementia). You have all my support in all you do and I would be happy to add my name to any initiative that sees this term, coined by Big Business, put into the dustbin where it belongs.

    aye Peter

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  16. At a loss to verbalise my thoughts.
    After following your blog for many years and really understanding what you are saying, I feel a sense of guilt in having followed the advice of the professionals. I effectively lost my partner on day one of the treatment, and my sons lost their mother. They have both commented as such.
    I hope you keep battering away at this.

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    • Dear Jeff, I’m always amazed to hear from you, though this time I’m in tears… please never feel guilt for following the advice of the professionals. They are and we’re doing their best, but unknowingly were sold a ‘lemon’ as they say!!! I’ll definitely keep going, in the hope that one day people like you and your sons NEVER have to experience such a tragedy. I’ll be forever grateful to my university for helping me see dementia as a condition causing disabilities! Take good care and please be gentle on yourself. x

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  17. Hi Kate I look forward to reading more of your thoughts on this topic. It may seem it’s a long way of that others will consider your suggested options as the norm but if we don’t try then nothing will change, so hang in there some of us are on your side. If we do nothing then one thing will surely happen and that will be nothing. “Look at a stone cutter hammering away at his rock, perhaps a hundred times without as much as a crack showing in it. Yet at the hundred-and-first blow it will split in two, and I know it was not the last blow that did it, but all that had gone before.” – Jacob A. Riis
    I hope your trip went well x ness

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      • Tell me what I have, all the nomenclature in the world but what will help me. I will write a short answer that goes beyond the non existent prescribed medicine which currently exists as placebos. Einstein wrote that we are made up of electric energy and this moves within us, untapped Perhaps this is the culprit that stimulates dementia, lack of blood and oxygen in the brain, the missing link. Blood and oxygen provided by us the patient from our own body energy. The drying blood energy requires a fresh supply which we can create by more activity, like exercise and swimming. Other stimulants that can cause blood etc to attack the brain to function normally. Body diet should include folates, solanium, D3, B12 and what was used in the old days, natural herbs.. . Since I am a layman not a physician, these are my thoughts, what are yours? Kate sorry to be little long winded and I present my analysis primarily for your benefit.

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      • Dear friend… I’m not sure what to say! All very interesting and I agree re the oxygen and fresh diet, and supplements. I’m probably considered a layman these days too. Perhaps the perfect place to be!

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