We still need to Ban BPSD

In 2015, Dr Al Power, Daniella Greenwood and I were accused by a young academic of being deeply offensive, and wrong. This was after we had all given keynote presentations at a conference challenging the status quo in dementia care, and in particualr challenging the concept of BPSD. We believed then, and I’m confident I can speak for them on this here, we all believe even more so now, that care practices need to change and we need to #BanBPSD.

Late last year, long before the COVID travel restrictions, I gave a presentation at a workshop hosted by the Special Interest Group on the Behavioural and Psyhcological Symptoms of Dementia.

I was the ONLY person with dementia there,and when I commented on it, I was told others could have registered.

The problem with this, is I had to self fund to attend Iit was held in Sydney, I live in Adelaide). Most others with dementia are not prepared, or are unable to self fund their inclusion; I have been around long enough to know that in many cases, if I [we] don’t, then we don’t have a voice, and our inclusion is not equal to others.

Anyway, I spoke for the allotted 3 minutes about why I believe we need to Ban BPSD (yes, 3  minutes, so it cost me approximately $229 per minute, plus taxis).

And I’m not employed, like every other person in the room was.

Once again, although perhaps more gently than at other times, I was admonished by one of the academics in the morning tea break (from my perspective, it felt like I was under attack).

In fact, it is important to fess up how hard it was to cope with, as I ended up in the Wash Room sobbing in the break.

I’m reasonably sure if I was an ‘academic’ working in another university, I would not have been attacked, but a professional conversation would have ensued.

Even though I consider this person a friend, and respect her greatly, the tone she first spoke to me in was angry, and defensive. Even later in the day, it continued. I did not intend to upset or offend, and had merely copied a list from an Australian government website (obviously, with reference to it). Some days, I still want to scream… but more often in situations like this, I end in tears, as my emotions are more labile these days.

As most who have folowed my blog for a while will know, I often talk about the harm of labeling walking as wandering.Wandering was seconnd on my list that day, as a harmful label, but only near the top, as that is how it was listed on the government website.

In a post which I thought I had read on Medium, Dr Shibley Rahman says: “Somebody which the healthcare staff can take delight in calling ‘wandering’ on the ward may indeed, in all fairness, be distressed and extremely bored for being in an unfamiliar environment. He is likely to have his distress exacerbated if he has a “1–1” following him everywhere, as if he has committed a serious crime. If he has further been deemed to lack capacity, a ‘deprivation of liberty’ notice can be slapped on him. But someone once said that human rights are inalienable and universal?

It’s important to be kind even when we disagree with someone. If only everyone lived by that motto.

Two things I find perhaps the most disturbing of all things in the world of activism and advocacy, is 1) how often people without dementia think it’s ok to attack or bully peope with dementia, and 2) why inclusion is often denied if we cannot self fund.

They continue to make me more than…

Curious…

12 thoughts on “We still need to Ban BPSD

  1. There remains a cold arrogance with which the keepers of the dementia knowledge relentlessly silence, belittle and diminish the real-world experience and knowledge of groups and individuals who challenge their authority – and without reference to their own conflict of interest in doing so (see for example Cunningham, Macfarlane & Brodarty, 2019).

    I stand in solidarity with the residents I have cared for and bear witness that this arrogance is not without consequence in the day-to-day lives of the most vulnerable citizens living with dementia in residential aged care. We have tried our best (often to our own personal and professional detriment) to let others know that the BPSD behavioural construct is doing real harm everyday in residential aged care – it guides practice, structures relationships and serves as a justification for the ‘business as usual’ infliction of a range of shocking abuses such as those that are now being exposed throughout the Royal Commission into Aged Care Quality and Safety.

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  2. Thanks to you Kate, I have been working to bring BPSD to light as an inappropriate way to label PWD. When I think of the list of possible BPSD as applied to myself, and I am not a PWD, I would act the same way in the same situations, especially if no one would understand and/or listen to me!

    For the most part, my experience with the Dementia Special Care Unit at the Lieberman Center for Health and Rehabilitation, with Gregory’s 18 months there was good. However, I did have to fight on his behalf for common courtesies that would have been extended to a person without Dementia.

    Gregory liked to walk around the four wings. There were architectural photos of important Chicago buildings on the walls, Gregory had always been active and liked to walk, and he just enjoyed being on the move. The nurse’s office told me that a psychiatrist had visited with Gregory and felt he should be on an anti-depressant because of his “wandering.”

    I refused saying, “I need to talk with the doctor.” The doctor called and explained Gregory’s “wandering” as walking the halls. I told him that in no way was Gregory to be medicated for this innocent, exercise and time enriching behavior and his response to me was, “OK, if you don’t care about Gregory’s well being then I cannot force you but you need to give this more thought and reconsider.”

    I thanked him and told the nurse’s office that I wanted him OFF Gregory’s case and another psychiatrist assigned. We all “lived happily ever after!” Keep up the good work Kate. There are so many of us that do believe in your work and support you.

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    • It is wonderful you are part of the growing global movement to get rid of this harmful, and unhelpful paradigm. People with dementia have been held to a much higher account than ALL others, for decades, and it is time for this to stop.

      If these so called ‘symptoms’ of dementia can be suported with for example, a changed environment, then thet are NOT symtoms of dementia (therefore not BPSD), are they?! xxx

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      • Absolutely, Kate–there IS a higher standard! People living with dementia do not have the right that the rest of us have, to express a full range of human emotions without being pathologised (and too often, medically silenced). I am so glad to read the comments of people who are adding their voices to the call to resist this harmful paradigm and show a better way.

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  3. It’s a bit daft… as it says this blog was posted on December 2, 2019. That’s when I started it, today is when I actually finished and published it.

    If anyone out there knows what I’m doing wrong, please send in the troops!

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  4. I can only agree Kate. I saw a case of bullying this morning when I was a guest at an online dementia cafe attended by people living with dementia and their carers (most were quite elderly). One woman being “supported” by her daughter, started to get up and walk away – the daughter grabbed her and pulled her down, and was clearly telling her off, whilst the elderly woman continued to try to get up and looked very distressed. I quickly sent a private message to the daughter saying “Looks as though Mum is ready for a break”, so as not to provoke her openly in case it upset her Mum – when she didn’t respond, I just put my hand up and excused myself to the group, saying I needed to have a short break as I was finding the talking a bit overwhelming – there were several nods. This prompted the host to suggest a 1 minute stretch, which we took and then returned to some music, where everyone appeared more relaxed and joined in the singing.

    Was this woman displaying a BPSD or was she merely indicating that she’d had enough of the meeting? If this reaction from her daughter is seen publicly, what goes on behind closed doors? How can this be seen as OK?

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    • What you describe is so common Bobby, and sounds truly awful to have witnessed. Well done on your ‘intervention’ though, even if unintended, an excellent outcome. As you say, what goes on behind closed doors… so sad 😞

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