If I’d needed evidence that awareness of dementia and its impact is increasing, then the last few days have provided it in spades. First there was Saturday’s Memory walk, about which I’ve already written. Then, yesterday, I attended a “Living Well with Dementia” conference, organised by Warwickshire County Council. It was an inspiring event and one which I’ll return to in future posts because there’s far too much to talk about in one.
The tone of the day was upbeat, apart from the political message which seemed to be an invitation to individuals and the voluntary sector to meet the increasing demands posed by the steady increase in the number of people living with dementia. Now, I don’t think I’m stupid – I do realise that for the state to pick up the bill in its entirety is unrealistic. Even with my rudimentary understanding of economics, I appreciate that the sums don’t add up. But I do worry about a “dementia strategy” which seems to expect so much of the people whose lives are already touched by the disease – the carers, the charity workers and the volunteers. We’re already doing a fair bit, more than our fair share some would say, and being taken for granted isn’t much of a reward. By the way, there are around 670,000 primary carers for people with dementia in the United Kingdom at a cost to local authorities and families of £23billion a year. With Mum in a home, I’m not classed as a primary carer so goodness knows how many people there are like me who also contribute towards the cost of care.
A former carer, Barbara Pointon, was one of the speakers at the conference. I’d heard her speak before but, if anything, she was even more inspiring yesterday. She tells it as it is and at one point during her speech, possibly after she’d described one initiative or another as “bollocks”, I tweeted that she has more impact that a thousand politicians. Harsh and probably not entirely fair but it isn’t without substance.
Another speaker was Dr Jennifer Bute, a former GP now living with Alzheimer’s. For her, “it is a privilege to understand dementia from the inside.” I’ll reflect on Dr Bute’s wise words in weeks to come but in keeping with most of the day, we were left feeling galvanised by the strength of her conviction that dementia is “not a bleak and depressing subject but a wonderful opportunity.”
Professor Dawn Brooker of Worcester University talked about person-centred care, reinforcing the message about people living with dementia: “When you’ve met one person with dementia, you’ve met one person with dementia.” So much to take in, so much from which to take heart.
The day had started with some extracts from “Finding Joy”, a piece of theatre on the subject of dementia. Mere words in a blog can’t do it justice but I would urge everyone with the slightest interest in or concern about dementia to see the whole production. Go to http://www.vamostheatre.co.uk where details of a national tour at the start of 2014 will shortly be published.
And so, I went to see Mum today with the words of Barbara Pointon and Dr Jennifer Bute still ringing in my ears. As I arrived, a song was playing – “Out of Town” by Dickie Valentine. Mum owned that recording on a Lords Taverners 78 (in fact I still have it) and we managed to stumble our way through a verse and a chorus, as well as trying a little jig, much to the amusement of other residents.
I took my wedding album along. There was no special reason except that I hoped it would spark some interest. It did, but only a little. Never mind, I was able to walk through the album with her, telling her stories about the day nearly 13 years ago, stories which she was at the heart of but which now don’t exist for her. Fortunately, she found my lame jokes amusing and it made for a diverting quarter of an hour or so. But, as usual these days, Tom the kitten stole the show. He joined us at the table – in his case on it – but his interest was in trying to gnaw the pages of photographs. Mum is genuinely delighted by his furry presence and I couldn’t resist concluding this post with Tom. For Mum, person-centred care is about those stories, stories she no longer remembers but which, I hope and I think, do resonate with her in some way. And person-centred care for Mum involves Tom. And that’s just an excuse for these!