The Alzheimer’s Disease International organisation held its annual conference this year (2015) in Perth, Western Australia. The title of the conference was ‘Cure, care and lived experience’, and indeed many delegates who attended there are living with dementia. I feel that we had a sensational time.
With dementia now on the world stage following global events, there has inevitably been greater scrutiny of who’s saying what, where, how, when and why. More detail is being added to the canvas: for example, do we really mean ‘friendly communities’, or do we mean ‘inclusive’ or ‘accessible’ communities.
Language matters enormously; and we, I feel, are collectively in a much better place than where we were only a few years. The social movement of people living with dementia and those in caring and supportive relationships, is experiencing a ‘sea change’; the disability movement has had a lot to do with it. Words which have been commonly used without a second blink, such as ‘wandering’ or even ‘carers’, now need attention, but even here there is a danger of paralysis by analysis.
It’s no longer permissible for ‘professionals’ to compound the stigma. Terms such as ‘challenging behaviours’ are now being recalibrated in response to basic humanity; an understanding that people living with dementia, like all of us, can feel very frightened.
Language is not the only factor which has framed the narrative. Laws also do. But there is a common humanity which far transcends laws. Whilst a general election in the UK has recently turned the focus onto human rights, ‘rights based advocacy’ continues to build an unstoppable momentum, partly in response to international conventions, but also in response to meeting people’s fundamental needs.
It is now palpable in international policy that there are compelling arguments to bring together all the factional parts of the health and care systems, and that the wellbeing of individuals is fundamentally dependent on building bricks in the rest of society too.
Both research and service provision for dementia are fundamentally driven by hope. This means the hope and aspirations of people currently living with dementia must not get squashed by poor care or diversionary tactics for a cure tomorrow.
People living with dementia represent a powerful resource in themselves. It’s now possible for one person trying to live better with dementia to find a friend in a totally different country through social networks. Communities literally no know no bounds, and patients happen to be persons who happen to become unwell sometimes.
None of this book is to be taken as professional legal or medical advice. What I have tried to do is to start a reasonable debate in certain areas, and it is up to others to take up the mantle. You are very strongly encouraged to go to the original sources of other people’s work which I have tried to discuss in good faith. You may legitimately come to completely different conclusions as me, and I have never intended to misrepresent anyone.
But now I’d like very much to thank certain people, not least people who have inspired me, or even not given up on me.
I’d like to thank people who’ve kindly given up time to write my Forewords (Beth Britton, Chris Roberts, and Kate Swaffer). I’d like to say thanks to people who have taught me about the dementias ever, in particular friends of mine living with dementia and their close friends and family. And I’d like to thank especially my mother and late father, without whom none of this would have been possible.
I essentially have two settled views: that demanding things happen to the nicest of people, and anything can happen to anyone at any time.
Take care.
Nothing’s going to stop us now.
Dr Shibley Rahman
London
May 2015
