Every now and then, it’s worth taking time to reflect on positive changes in our approach to dementia and dementia care. It’s easy to become frustrated because so much more still needs to be done, but we do all need to acknowledge the distance we’ve travelled so far – and I’m not in any way suggesting complacency; we simply need to recognise that important things are gradually changing for the better.
I recently read a piece by the ever-inspiring George Rook – and I always try to catch what he writes, because he talks such wonderful sense! George lives with dementia and speaks very eloquently on the subject, playing a key part in a number of organisations and really helping move things forward. He commented recently that his diagnosis was sometimes questioned by audiences: how could he have a dementia diagnosis and yet speak so fluently and well? George, of course, is one of a growing number of tremendous campaigners who live with dementia – and I’ll now probably cause offence by naming only a couple of others, such as Chris Roberts and Wendy Mitchell, but the list could continue for quite some time.
Fifteen years ago, when I was designing the Butterfly Scheme, it seemed obvious to me that the views and input of people living with dementia were essential. I was creating something for them, something to support them – so it was beyond question that their views and priorities needed to play a crucial part in the planning process. How I struggled to find those people back then – and how surprised they were to be consulted! When I did eventually manage to gather together groups of people living with dementia, I had the toughest audience yet – and quite right; they explored every nook and cranny of my plans and thoroughly discussed every element.
Nowadays, finding those expert voices wouldn’t be a struggle – and that’s surely a massive step forward. Most people now fully expect that the input and eventual approval of people living with dementia will have been sought before anything concerning dementia care is launched.
As in so many matters, what seems universally obvious now is only obvious because of the campaigning work that’s gone before. Yes, there’s still plenty to do – but we really have already travelled some important journeys.