As a journalist I’m wary of word counts and in the past I have been known to refer to “dementia sufferers” rather than “people living with dementia” because two words are always better than four in the world of the hack.
Now my use of language is being challenged. Not by pedants (I’d easily see them off), but by others whose opinions are harder to dismiss.
Those living with dementia are finding their voice and starting to be heard, which is great, and overdue.
In the course of my writing I’ve recently spoken to several people with dementia. There’s a natural selection process at work – it would be useless and inappropriate for the Alzheimer’s Society or Dementia UK to put up for interview anyone who is too confused or has lost the power of speech.
But as someone whose own mother had dementia for the last few years of her life, I have been delighted and humbled by the articulacy of those I’ve interviewed. I immediately knew that to describe them as sufferers wouldn’t be right and I tried, from that moment, to avoid the term.
Of course, as ever with language, the issue runs much deeper than the words themselves. The dementia community – those living with the condition, their carers, medics and other related professionals – are questioning not just the terminology used by wider society, but our attitudes.
How the rest of us describe those with dementia, how we talk about them, reflects how we think of them. Already, by using the words “us” and “them”, I have erected a subtle verbal barrier that I don’t like, but what irks me isn’t the point here.
Not all people with dementia mind being described as sufferers, but articles are for public consumption and their authors need to be sensitive about what, and how, they write.
It’s no accident that our national dementia strategy, launched in 2009, is called, “Putting People First. Living Well With Dementia”. The phrase “Suffering Well With Dementia” would not have worked, which neatly illustrates the point that many are seeking to make.
Alzheimer’s Australia has produced a set of guidelines entitled “Dementia Friendly Language” advocating the use of certain words over others, including the now (for me) obvious “person with dementia” over “victim” or “demented person”. It also suggests using “devastating” or “terrible” rather than “tragic” or “hopeless” and I wonder if such subjective differentiations are necessary or wise?
Certainly, if Alzheimer’s Australia is serious about using the right language, its latest public utterings seem unfortunate. Announcing the next phase of its “Fight Dementia Campaign”, it talks of “Creating a Dementia Friendly Australia”.
As @dementia_2014 (aka Dr Shibley Rahman, author of the recently published and aptly titled “Living Well With Dementia”) tweeted, “Awful cognitive dissonance: a ‘fight’ to produce ‘dementia friendly communities’?”
These could be considered petty pedantic points. Alzheimer’s Australia works for the good of those with dementia and surely it should be applauded, not criticised.
But therein lies the problem with prescriptive – some might say over-prescriptive – guidelines. We tamper with the complexities of language at our peril.
“Dementia sufferers”, though not appropriate, is precise. It seems the phrase “living with dementia”, though obvious in its meaning to me, is ambiguous.
A poem by Kate Swaffer entitled “Who’s ‘Living with Dementia’” is an elegantly wrought reflection on whether the phrase can also be used to describe those who, while not having the condition themselves, are living with and caring for someone who does. Kate’s poem provides her answer in its last two lines: “If they are not diagnosed with dementia / They cannot be living with it”.
Her blog provoked a slew of comments that revealed, behind the carefully chosen words themselves, the tensions and emotions of being close to someone with dementia. Every single one, I noticed, received a considered response from Kate, who is living with dementia.
I have always believed in the power of words. They inform and sometimes confuse; they may be used as a warm and comforting blanket; they can strike hard and shock and wound. They hold joy and danger. Perhaps the debate itself – the very fact that we are having it; the thoughtful conversations and poems about which words to use when describing the many and varied complexities of dementia – matters more than the merits and flaws of its opposing parts.