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Getting the language right is still an aspiration for dementia even if it is not codified

There are various variants of the old management adage, “If you value it, measure it”.

Prof Sube Banerjee co-wrote the only English dementia strategy so far. Mysteriously the five year strategy expired in 2014 and was never renewed, despite dementia still being a urgent social issue and the need to draw up a list of priorities for national policy which could not be simply left to a postcode lottery.

One of the issues which Banerjee faced was the substantial stigma and prejudice against the ‘dementia’ label, although ironically the dementia label has become very lucrative for the conferences wealth creation circuit.

When formulating policy, it’s well know there exists a level which cannot be easily codified as targets, more euphemistically called aspirations. There’s an issue in implementing strategy, even if you’ve drawn up the correct analysis, is how the behaviours, skills and cultures may be turned around by all involved.

Knowing the number of ‘Dementia Friends’ is one thing, and so is the number of times a #DementiaWords tweet has been retweeted, but the interesting question is whether any cultural change has indeed taken place in the last five years. I feel that that is more significant than the number of gongs awarded for dementia.

You see – I on the whole feel there has been a sea change. Somebody very close to me perhaps has been diagnosed with a questionable dementia, and I know I feel happy talking about it in a way that simply would not have been possible a few years ago.

But then I see headlines such as this on the Times newspaper published in London a few days ago, and I wonder whether things have really changed?

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Part of the way culture change was achieved in Japan was changing the language. In April 2004, three chairmen, led by Dr Hiroto Shibayama, of the Dementia Care Research and Training Centers, which are the main research sites on dementia in Japan, filed a petition to change the name of dementia because of the perception that the word Chihō  was derogatory. Chihō is a compound word, chi  and hõ; the character chi  means foolish and stupid. and the character hō  means foolish and absent-minded.

And even widespread acceptance of a term does not necessarily mean the term has no problems. Take for example ‘dementia friendly community’ – as a shorthand, it is useful in conveying a motherhood and apple pie notion that a community should be ‘friendly’, but given the complexity of living with dementia and the fact that dementia never travels alone (a person with dementia is likely to live with several other medical conditions), the term is clearly not right.

Nicola Sturgeon, first minister for Scotland with an extensive background in health and social care policy, mentioned two ‘i’ words this afternoon in her keynote speech for the SNP conference.

They were ‘inclusive’ and ‘independence’.

I think whatever you think of ‘dementia friendly communities’, and I emphasise it’s a catchy term which piggy backs onto other campaigns such as ‘dementia friends’ very conveniently, I think the inclusive rights bestowed upon people with dementia (and complementary rights of carers) are fundamental. It’s essential people not know how they can implement their rights, but also know in the first place what rights are available to them in the first place.

I’ve often thought about whether it’s possible to practise an aspiration to ‘independent living’ even as a resident in a care home. Without getting into the semantics of liberty and proportionality, I think the answer has to be yes in that Mr Y when he moves into a care home has a right to privacy and a right to open his own post, even though the address label might be different now. A right to independent living is a real practicality of people living alone with dementia, and we can’t necessarily assume that all people living alone with dementia have been given a formal diagnosis of dementia.

 

A discussion of whether people ‘suffer’ with dementia, for example poor pain control in acute hospitals or care homes, is important, so any discussion of language mustn’t make discussion of care issues taboo, arguably. It’s fairly uncontentious that many people are though suffering from a badly organised health and social care system, and our faith and reliance on certain leaders to speak truth to power may sometimes be misplaced.

Finally, I am always struck how the discussion of appropriate language is often led by people with dementia and carers themselves, rather than professionals. I do wonder why that is – and of course what can be done about it.

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