It was a great pleasure to meet Ming Ho, a family carer and talented writer, and so many other fab #dementiachallengers at the recent Dementia Congress, Brighton. Ming and I soon got chatting and found we had plenty of things in common. I will be very happy to post further guest blogs from Ming as we discussed several important areas that are not yet featured in the series….
Ming and I share a horror about the modern obsession with “measuring” everything. Research is obviously hugely important – I am very proud of my daughter who is a Clinical Trials Co-ordinator on a children’s cancer trial. Data matters. But I see teachers and social workers and other public servants leaving their professions because they can no longer stand the endless paperwork. Needless to say I mean the talented, creative ones who are worn down by too much bureaucracy.
To me, the things that matter most in life often can’t be measured. Living in the moment, using compassion in every human transaction (God forbid they try to “measure” that one!) and putting a smile on someone’s face.
Ming’s Mum is living with dementia, and like other carers in our “in my shoes” series, looking at dementia from different perspectives, it is the “human” factors that count. I can relate so well to this one – and similarly another blog I follow Alzheimers Anecdotes about the priority (and practical difficulty) of encouraging someone with dementia to clean their teeth.
Here is what Ming has to say…
WE MUST HAVE FACTS! (OR MUST WE?)
Today my mum had her hair done for the first time in well over a year. To most people, that will 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. A former singer and teacher, mum used to be meticulous in her appearance and took great pleasure in regular trips to the salon; then suddenly, a couple of years ago, she developed paranoia about submitting to this formerly enjoyable activity. I found it increasingly hard to persuade her, and finally she refused. Her personal grooming declined, and with it her morale and sense of self. I despaired that this would ever be overcome.
Last week I attended for the first time the UK Dementia Congress and 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. And 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. 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.
So will my mum’s hair-do be counted in statistics? 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.
Ming has written for popular TV series such as EastEnders, Casualty, and Heartbeat. She is currently Deputy Chair of the Writers’ Guild of Great Britain (@TheWritersGuild) and is working on her first novel. She is also a member of Uniting Carers, Dementia UK.
LinkedIn: http://www.linkedin.com/profile/view?id=147949002&trk=tab_pro IMDb: http://www.imdb.com/name/nm0387356/
© Ming Ho: 12/11/2012