We Must Have Facts! (Or Must We?)

In the autumn of 2012, I was invited as a member of Uniting Carers, Dementia UK, to attend the UK Dementia Congress in Brighton.  It was my first visit; I was amazed at the wealth of information, initiatives, and innovations. 

But it also struck me that there was a lot of jargon: talk of protocols and positive outcomes, all clicked through with endless power-point presentations.  Again and again, the question of data came up – how can we “prove” this is effective?  What’s the methodology?  How can it better be measured?   

Of course I appreciate that most of the delegates were care professionals, academics, and scientists, and these are the tools of their trade; evidence forms the basis of their practice and is needed to gain funding.  

Yet one of the most memorable anecdotes, arising from a session on dementia-friendly communities, was that of a man called Bert.  Bert loved to go to the driving range to hone his golf shots; but when a researcher first interviewed him, he hadn’t been for four years.  On camera he seemed very confused, frail, and listless.  It turned out that he hadn’t been to the range because there was no-one to go with him.   The researcher took him – and Bert instantly hit a crack shot.   

Image: Stuart Miles
FreeDigitalPhotos.net

Filmed after the trip, he was notably more articulate, animated, and smiling: a different man.  But had those interviews not been recorded, no-one but the researcher would have seen that; the (admittedly temporary) transformation wouldn’t show up in any data. It was plain and precious to anyone watching, but impossible to quantify.  

Other sessions on the use of arts in dementia care repeated this finding: activities that tap into the emotions and offer social contact anecdotally have positive effect; but because the recipients have no lasting conscious memory, and mood – unlike physical capacity - is fleeting and subjective, this is notoriously difficult to prove.

A day or two later, I was delighted to receive news that my mum, now in care, had had her hair done for the first time in over a year. To most people, that would mean nothing, except perhaps a moment’s recoil that it had been left for so long. But for her and for me it was a hugely significant event. 

I was reminded of Bert and the human interaction that had made all the difference to him. Would my mum’s hair-do be counted in statistics, I thought? No. But it was achieved through immense patience, perseverance, and planning by the staff where she now lives, and is greatly appreciated by me and hopefully by mum. This is what makes good care.

So please, all you academics doing such wonderful research and commissioners reading those reports - don’t lose sight of what it’s for.  Resist the mantra of Gradgrind, the authoritarian teacher in Dickens’ ‘Hard Times’, who advocated “Facts, Sir; nothing but facts”; and remember that, for those with dementia, feelings and imagination are often the only truths. 

A version of this piece was first published as a guest post on Gill Phillips' blog, Whose Shoes.  The original post can be seen here: In the Shoes of Ming Ho.