The value of spaced repetition, which wikipedia says is “an evidence-based learning technique that is usually performed with flashcards” is perhaps why I actively repeat myself a lot. Perhaps my blog and the BanBPSD posts can be considered flashcards! Evidence suggests that after about six repititions, knowledge starts to become embedded. It feels like the right time now, to restart the dialogue on why we need to ban BPSD.

Kickstarting the campaign (many years ago now) which challenges the contruct known as the Behavioural and Psychological Symptoms of Dementia (BPSD) #BanBPSD has brought on many experiences of bullying, in particular by academics and clinicians, and I actually wonder if todays blog will too, even if more in a more subtle way.

Not that this matters, as regardless of that particular risk, it will not stop me expressing my truth, and my beliefs. Having a diagnosis of dementia has exposed just how unkind people can be, so I am more than used to it now.

Ironically, in efforts to disprove my theories, some people have unwittingly, or accidentally proven them to be right. It is relevant also to the topic of why I needed a new tribe. For example an article published in April 2019 Language paradigms when behaviour changes with dementia: #BanBPSD, actually helps explain why we need to ban BPSD.

Everyone, with and without dementia has challenging behaviours, most of which are usually normal human responses. A piece by Al Power MD written after a conference in Perth, Western Australia few years ago, reminded me of just how unpopular the BanBPSD campaign was (perhaps still is). My poster presentation at this conference, Who’s got the challenigng behaviours? was similarly unpopular!

At a conference in Melbourne a few years ago, after I talked about the need for deinstitutionalisation and desegregation in my presentation, two members of the audience who worked in institutional aged and dementia ‘care’ settings, literally yelled at me in the Q&A session, telling me how wrong I was. It required an intervention from one of the other speakers and the conference hosts to stop the harassment.

In my own experience, being actively ignored by people I had believed were friends and colleagues (and who I thought would at least behave professionally), has been another weapon to try to silence me, and exclude me, as has the creation of opportunties and academic articles to prove me wrong. The #BanBPSD campaign has been contentious, and obviously upsetting for some people as it does challenge decades of their work and clinical practice; perhaps, on a personal level, they also feel it has challenged their credibility, and threatened. My experiences of this have even included being yelled at and bullied in a toilet block by a very senior academic.

But the #BanBPSD campaign has also gained hundreds of supporters globally. Whilst many still quietly attempt to quash the campaign, and the #BanBPSD campaign is silent publicly, it continues in different ways.

In fact, the covid pandemic has not only highlighted, but has reinforced, without years of costly and time consuming Evidence Based Research, that there is an urgent need to ban this harmful paradigm. For example, if isolation causes apathy, depression and even aggression in people without dementia, then of course, it has the same affect on people with dementia. The difference is, people with dementia are not offered the same support, and instead are more often physically or chemically restrained.

Another example of prefessional bullying is my personal campaign for rehabilitation for dementia which started soon after diagnosis. One academic and clinician, a member of the national advisory group developing the first Australian National Dementia Clinical Guidelines not only yelled at me, “What would you know, you’re just a person with dementia…”, he stormed out of the room, never to return to the two day meeting in Sydney. His colleagues apologised on his behalf, then a few years later, when rehabilitation and dementia was becoming more ‘popular’ and mainstream, this person gave a lecture on it in Adelaide, Of course, I attended, and sat in the front row, eyeballing him throughout for a bit of ‘fun’. The World Health Organisation is soon to launch their Guidelines on Rehabilitation for Dementia, which like their Mental Health Quality Rights materials for training, guidance and transformation, I am proud to have worked on.

Feel free to download my poster from the 2015 ADI Conference, also added as an image below.