It was my new years resolution to write more! January went by in a flash, and this month is racing by too. At work we are in the grip of 'winter pressures' What that means in reality is the cold, the rain, the terrible floods, the grip of winter - means our hospitals are needed more than ever. So this means there has been a lot of people with dementia, and their carers coming into contact with our little team. Often I encounter an attitude, a problem, a dire situation for someone with dementia. I make a mental note that I must write about it, but all to quickly the next situation arises - and my attentions are refocused. One day I will see someone who has lived with dementia with practically no support, maybe a carer is struggling to accept a diagnosis, maybe it will be helping someone who is nearing the end of their life. Often there will be a person with dementia for whom hospital is a difficult place to be: Maybe they have let us know how hard they are finding it by lashing out, crying out, turning away from the nurses trying to help them. That's a significant part of being a dementia nurse in a hospital - helping those people find a way to tell us what is needed. Not easy. So you can see: so many questions, so many attitudes that need to change, so many questions........
I attended the launch on Saturday of 'Living Well with Dementia', by Dr Shibley Rahman. This book, years in the writing, and thus far very well received, might just help with starting to lay down answers to the questions we are continually asking. Why isn't the wellbeing of people with dementia made plain in health and social care agenda's? Yes - we are told by strategists and health leaders that everyone with dementia will be helped to 'live well', - and I welcome that, but maybe those strategies don't go far enough.
At its heart, this book has the voices and experiences of people with dementia and their carers. Their voices are interwoven into the book in a way that is inclusive, not mere tokenism. Shibley spoke candidly at the launch, of the taboo's around care at the end of life, sexuality, the aggressive stance of the dementia challenge in its language. There was recognition of what people with dementia and their carers live with day in day out - the tears, the laughter, the business of simply 'living'. It is this lived experience that gives the book a 'soul'
We cannot afford to reject the concept of well being. It just makes too much sense to be ignored. In my job, I see every day what happens when a sense of well being is absent. As with any long term condition, dementia is not something we should just 'manage', or 'treat'. We must help people to live their lives, find acceptance when dementia forces it's way through the door. We must not stigmatize - yet I am afraid we still do. There are lots of text books about dementia. When I was a student nurse I read Tom Kitwood's Dementia Reconsidered - I remember feeling a sense of excitement reading that book. I can honestly say I feel just as excited by this book. It goes beyond the obvious questions that are always asked. This book is going to be an influential text that will surely go a long way in contributing to re balancing the health and social inequalities experienced by people with dementia.
The first case of 'Alzheimer's' was diagnosed well over one hundred years ago. I recently read somewhere there is a feeling in research and societal attitudes that we haven't moved on very much since then. This book gives me hope that we are finally doing just that.
