Scrolling through my Twitter feed (as you do) I came across Gina Shaw. I didn’t know anything about her but I opened a link and there she was, telling her story.
Very powerful it was too. Gina, sitting in what looks like her living room, tells us that she’s 61, lives in Liverpool with her husband and two children, was once a children’s nurse, and loves singing and going to gigs. As she talks – fluently, with confidence – the camera pans onto photos of her younger self, in nurse’s uniform and cap, and we begin to get a sense of who she is.
Of course we know what’s coming. We know because Gina’s clip appears on the Alzheimer’s Society website; she is the face of the latest Dementia Friends campaign. When this softly spoken woman pauses for a moment too long we know what she’s about to say and we can see, without her explaining (as she does) that a year after being diagnosed with dementia she’s still getting used to it.
No sooner does Gina start to tell us about her symptoms than she can’t remember a word she needs. What it means to have dementia is being played out in front of our eyes. When Gina falters over telling us the hardest thing she’s had to do, I falter with her. I imagine telling my daughter Emily that I have dementia.
It’s easy to be sceptical about Dementia Friends. A Government-inspired initiative, they’re often dismissed as no more than a cost-free gimmick, dispensing badges rather than meaningful action.
But Gina’s story touched me as few do (and facts and figures certainly wouldn’t) – because she was telling it, living it, drawing me into her world. A world that’s been shaken to its core. As soon as the video clip finished I signed up for a local Dementia Friends session.
Naïve – moi? I don’t think so. I’m an old cynic – a journalist remember, and the wrong side of 50 to be anything else. I’m aware that the Alzheimer’s Society, or its PR department, or David Cameron’s Government (if you want to take it all the way) had hooked me through the power of Gina’s story. The point is their method worked. Besides, if the hour-long Dementia Friends course is truly awful, I’ll report back and call the whole episode a piece of journalistic research.
The fact is that stories, as Ed Woodcock says, “make you believe”. We store a story in an emotional way, processing it as a belief, not a fact, and as a result it is a very potent thing. Advertising agencies are well aware of this which is why the best adverts play on emotions. Think John Lewis at Christmas time.
Ed is strategy director at Aesop, a branding agency that believes, like me, in the power of stories. On the day I signed up to Dementia Friends, Ed told an audience of healthcare professionals that in addition to its plot, every classical story has a hero on a mission (or journey), some trouble or conflict and a moral or meaning. I couldn’t help but think of Gina, the reserves of strength she’s having to summon and the journey she’s embarking on.
If Gina’s story gets us talking about dementia, if it starts us thinking about the way we treat those who happen to have it even as we’re being told that there’s a one in three chance that one day that will be us, and if it gets us arguing the toss on the pros and cons of Dementia Friends, that – in itself – is a good thing in my book. It raises the subject of dementia and in so doing helps, if only a little, to dissolve lingering stigma, while perhaps, hopefully, informing people about this misunderstood condition.
Kate Swaffer, another of my heroes (or heroines) was diagnosed with younger onset frontal temporal dementia aged 48. She writes a searingly honest blog about living with it, charting her journey and providing, through choice words and pithy phrases, an insight into not just dementia, but life itself. She humanises her dementia and I suspect that were her story to be played out as a pantomime we’d all be booing the villainous Mr Dementia while applauding to the rafters our leading lady.
Without wishing to get too heavy (which I have a feeling that Kate would hate), she’s lending us all a sort of moral compass. She’s showing us, through her life and writing, how it should be done. What exactly “it” is, is up to us.
Kate Granger has incurable cancer. The film that she and her husband Chris have made to raise awareness of Dying Matters week this week (promoting public awareness of dying, death and bereavement) is extraordinary in its strength and truth.
Kate is a registrar in geriatric medicine. She is familiar with death, but not – until now – as a patient. Her film conveys a medical expert’s informed, darkly humorous, reflective perspective on a journey with cancer. Her story is at once open and communicative – she tweets prodigiously and launched the successful #hellomynameis campaign to encourage medical staff to introduce themselves when treating patients – and very private.
The bond between Kate and her husband Chris is tangible and there is something unbearably tender about the way he always seems to have an arm around her in the film as if to protect her. He can’t save her from cancer, the baddie in her particular story, but he can – and I’ve no doubt he will – ensure that her wishes are followed when the time comes.
When Beth Britton was 12 her father developed vascular dementia. His condition dominated her teens and twenties, changing the course of her life as she made his care and wellbeing her priority.
Beth’s story is so compelling – it is unique in my experience for someone so young to dedicate her life to a parent – and her abilities as a communicator so skilled that she has become one of the country’s foremost campaigners for improving the lives and treatment of those with dementia. During last December’s G8 Dementia Summit Beth attended a roundtable discussion with the Prime Minister no less.
Her journey may have taken her to No. 10 but everything Beth does is underpinned by, and returns back to, her own history. As she says, “Everything my father went through, and that we experienced as his family, is there to inform, educate and influence others”.
Each of these remarkable women tells her personal account in her own way. It is perhaps as much the manner in which they relate them as the content that stirs things up. Beth Britton began her campaigning career with thoughtfully composed D4Dementia blogs that caught the eye of some influential people. Gina Shaw and Kate Granger’s films spoke to me with a quiet yet potent emotion. While my virtual Aussie friend Kate Swaffer just keeps popping up from down under, disrupting my Blighty routines with her inimitable “Swaffertime” courage and wit.
These stories won’t all have happy endings. But the telling and retelling of them – their dissemination through films, Twitter, blogs, newspapers, magazines, TV and radio programmes ensure that they provide the means to positive ends.
As for my Dementia Friends training, whether or not it comes up to scratch remains to be seen, and written about, and hopefully read. Take it as my contribution to the unfolding saga of 21st century dementia and how we can all help those unlucky enough to find themselves at the centre of its plot to live as well as they possibly can.