Who is really challenging?

As regular readers of D4Dementia will know, I’ve long been a supporter (including through the National Dementia Action Alliance Campaign ‘Dementia Words Matter’) of using respectful language – as defined by people living with dementia – when communicating about dementia. I believe that from language comes attitudes, and of course how people are treated is then heavily influenced by those attitudes. So, in short, it’s about more than just words.

Sadly, since I (and many others) have been banging this drum nowhere near enough has changed. I’ve mostly given up with the sensationalised headlines that newspapers favour. Journalists are often expected to write a certain type of copy, and as a writer myself I have sometimes had to refuse assignments when what is asked for isn’t something I’m prepared to deliver, but I have also found chances to educate with other publications.


Trouble with the language

Late last year I had a request to endorse a new book on dementia, written by a doctor, that seemed on the face of it to be an interesting opportunity to read a new publication prior to its release. Sadly, however, I had to withdraw from potentially making an endorsement when I saw references to ‘BPSD’ (Behavioural and Psychological Symptoms of Dementia) and ‘wandering’ on an initial quick scan through (I would recommend reading about the #BanBPSD campaign as detailed on Kate Swaffer’s blog for more information on this terminology).

The only good thing to come from this book-reviewing experience was the opportunity to signpost the publishers to the gold-standard in dementia language guidelines, a recommendation that was well-received although I suspect it was too late to change the copy in the book. I was perhaps naive – I know the medical profession are trained using language that, more often than not, isn’t reflective of the ways in which people living with dementia would like to be described, but I had expected attitudes might have modernised somewhat by now.


My language benchmark

In my training and mentoring work I have a clear language benchmark for health and social care staff. I ask them to go through a checklist whenever they are going to write or speak about someone with dementia that includes:

  • Would I be happy to say what I’m going to say to the person directly?
  • Would I be happy for the person to read what I’m going to write about them?
  • What do I think the person would say? (Thinking not just about the person’s current health but how they might have felt before they had dementia)

And perhaps most crucially of all:

  • If I was this person, would I be happy to be spoken or written about using the words I’m thinking of using?

If you answer negatively to any of these questions, change your words, it’s as simple as that. And interestingly, by changing language it really does start to change attitudes, as I’ve witnessed when care plans have been radically altered, staff practice has become more open-minded and responsive, and the experiences of individuals living with dementia have improved as a result.


Do you still use the term ‘challenging behaviour’?

Perhaps the most divisive terminology that I still see is ‘challenging behaviour’, which was brilliantly addressed in a blog Wendy Mitchell wrote at the end of last month. Wendy had been for a visit to Portsmouth Hospital, talking to staff about her experiences of dementia. In her blog, Wendy said:

“We’re often referred to as ‘Challenging patients’ but I refer to challenging staff. There’s a reason why we’re distressed and it’s up to you to find that reason. You need to enter our world as we simply can’t enter yours….”

There is no more I can add to that, except to say that I 100 percent agree with Wendy. It’s an uncomfortable truth to confront staff with, as I have done on many occasions, but an absolutely vital issue to deal with. Writing off someone with dementia by saying they have ‘challenging behaviour’ gives many staff the impression that they’ve ticked the ‘too difficult to deal with’ box and don’t need to do any more.


Reframing words, thoughts and actions

Reframing thinking by saying it’s ‘changed behaviour’ (or ‘Changes associated with dementia’ as I call one of my training modules) and challenging staff to find out what’s changed is a crucial first step. And incidentally the answer is never, “Well the person’s dementia has got worse.” Reasons are as numerous as people are different, so there is never a one-size-fits-all answer. However, there are some universal themes which often reoccur, including a person with dementia feeling worthless, confused, frustrated and/or bored leading to what might be interpreted as being distressed, disruptive or destructive.

I know I’d go crazy without occupations to keep my mind and body engaged and, ultimately, to feel that I’m living. Simply expecting people with dementia to sit quietly and slowly die is perverse. Engaging people in familiar occupations – or indeed new ones – that give them purpose, passion and excitement again is often a key first step. Believing in what people with dementia can do, and finding ways to work side-by-side with them to achieve everything from the mundane to the amazing is what living with dementia, rather than simply dying of dementia, is all about. 


Rise to the challenge to change practice

So, bravo to Wendy Mitchell and everyone else who’s pointed out that the challenge is for every one of us who isn’t living with dementia, not for people with dementia. I for one love to rise to that challenge, find new ways to support a person that does away with the old model of dependence, disablement and drugging people to make them ‘compliant’, and that says: 

I will work with you to make the experience of living with dementia the best it can be for you, seeing you as a person and recognising what you can do rather than focusing on what you can’t.

Until next time…

You can follow me on Twitter: @bethyb1886
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