There’s a lot about dementia in the news these days. That’s good. We need to talk about it; it’s a burgeoning issue. But why must it be illustrated nine times out of ten by that close-up of trembly, wizened hands?
In recent years, the term “dementia sufferer” has effectively been outlawed among care professionals (although the media have yet to catch up), with the positive aim of redefining the status of those who experience the syndrome and banishing "victimhood".
Two main alternatives have emerged: “people with dementia”; and “people living with dementia” – neither of which trips smoothly from the tongue. Leaving aside the wider debate about language (to which I may return at a later date), one can applaud the concept of acknowledging the person first and the condition as subsidiary. But there is another plus of the latter term: it can arguably encompass others drawn into the web of a loved one’s dementia.
According to the UK Alzheimer's Society (2014), there are currently 850,000 people with dementia in the UK and 670,000 carers of such. That’s probably an underestimate, given the vagaries of diagnosis and identification, and it will grow exponentially as the population ages, but even so – over 1.5 million people already living with dementia, in the sense that their lives are affected on a daily basis.
|Photo: BBC News|
The data also projects that “family carers of people with dementia save the UK over £11 billion a year”. But what concerns me is the wider “cost”, which is far more than money. I know; I’ve been there.
This blog is not a chronicle of daily care or an advice site; there are many others to fulfil those needs. Here, I’ll be posting occasional thoughts for debate pertinent to carers of people with dementia and other interested parties, and links to articles I’ve written elsewhere on the subject. (See my other blog for stage, screen, and fiction writing.)
|Photo: BBC News|
For all the media and political attention, no-one truly understands – or wants to know – what dementia means until it directly affects them; but with greater life expectancy, it’s more than likely we shall all be touched by it some day.
I want to remind the wider world that, while it may never be "sexy", it’s not a sideline issue – not only the elderly “live with dementia”.
My mother-in-law has dementia. She lives in America and my wife and I in Scotland so I only get to hear the stories—my wife visits three times a year whilst I bird-sit—but I have been reading a lot about the problem recently for research into a book I’m struggling to find a way into; I’ve written five so you’d think the sixth would be a cakewalk wouldn’t you? One of the books I bought was David Shenk’s The Forgetting which I was quite taken by because he wasn’t afraid to tackle some of the bigger questions, the ones that governments need to be answering. As a race we’re really bad about dragging our feet. Just look at the world’s environmental issues. Although over a decade old now I would still recommend it to anyone who knows nothing about the disease as an entry point read but not on its own. As a companion read I would suggest Andrea Gillies’s Keeper in which we get to witness the day-to-day life of a family who have to care with a dementia patient; I actually couldn’t sleep last night the book upset me so much because now I realise just how far gone either my wife or I will have to be before we can expect much in the way of assistance and that’s truly frightening; my wife says I’ve a terrible habit of always imagining the worst but my logic is that a pessimist can only ever expect good news. I also read Still Alice which is a novel and certainly a well-researched book but after reading Keeper I see just how airbrushed the book is which is a shame because it’s heart is in the right place. That said it was a bestseller and I’m sure for all its failings a lot of people know at least something about the disease which, as you say, will either affect them or someone close to them sooner or later.ReplyDelete
Thanks, Jim, for the info - and for posting the first comment! I'll be posting here from time to time; hope you find it useful/thought-provoking.ReplyDelete
In the meantime, do also check out the links above (to Dementia Challengers and Whose Shoes - both excellent resources).
Hi Ming. Great start to your blog. I look forward to more posts. I agree about the wizened hands in terms of how it 'allows' younger people to see it as something far off, a reality they don't need to connect with. Images are always a tough one. I'm co-editing the NAWE magazine later this year, focusing solely on writing and dementia. Has your other creative work been witness to or 'inspired' by your relationship with your mum and dementia or vice versa? Perhaps we could have a quick chat next week? Susanna HowardReplyDelete
Hi, Sus. Thanks for the post. I've only started writing about dementia issues in the last year, since my mum went into care; I didn't feel I could (or wanted to) previously, for various reasons. My creative work has been in mainstream popular TV drama and I haven't referenced dementia in this to date - although I may do now.ReplyDelete
Yes, I'd be happy to chat next week. If you follow me on Twitter @Minghowriter, I'll DM you my number. Cheers!