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.
Hi Pippa,
This is a beautifully crafted and well considered blog, thank you for writing it. Thank you also for bringing up the tension I too feel about the use of the language of the ‘Fight Dementia’ campaign in Australia.
I have been involved in that campaign, having spoken at our first rally http://www.youtube.com/watch?v=tgPVzT33UZQ&feature=channel&list=UL
which you might find interesting. Whilst the language is negative, the campaign has been very successful.
Also, we are currently working on updating the Alzheimer’s Australia language document, and the conversations I have had online over the last few weeks will help with that enormously. Thank you for your insights.
Take care, and keep up the blogging!
Kate x
Hi Kate
Thank you so much for taking the time to respond. I have just watched the clip of your rally. Several things sprang to mind:
1. You spoke in front of a large public gathering far better than most people living without dementia could ever hope to do.
2. It was moving to hear you talk of your husband. He must be, while so very sad, tremendously proud of you.
3. I have heard you and read you speaking of living for each day now. This is a sobering and humbling thought. Those of us without dementia take so much for granted, including our time and our future. You value time in a way that we never do; this is food for thought – and blogs!
Anything else I may say sounds too patronising or false. But you are a true inspiration – to us all. Really.
Ever onwards!
Px
Shifts in language use are interesting in general, but particularly in relation to people with long-term conditions (which was the parlance last time I checked). In a twenty-five year career as a clinical psychologist I saw the labels change from mentally handicapped to learning disabled for people who not long before had been termed cretins etc. While I think how we talk about people does matter, how we treat them matters more.
This is my first visit to your blog and I was wondering what you think of the depiction of dementia in fiction. I don’t know if you’re aware of Emma Healey’s novel Elizabeth Is Missing due to be published in June? I’m pretty impressed myself: http://annegoodwin.weebly.com/emma-healey.html
Hi Anne
Many thanks for your comment. I have just discovered Elizabeth is Missing and intend to buy it; Maud sounds like a wonderful character. I have a novel with an agent at the moment in which one of the characters has dementia (she’s loosely based on my mum). Margaret Forster’s “Have The Men Had Enough” is a good portrayal of the way dementia affects a family. I’m now on the look out for more fictional accounts of dementia – perhaps we can share any we find!
Welcome to blogging. Thoughtful post about the language opf dementia. I am just researching a post (for next Friday) on how writing and readinghas helped some people with dementia. The power of the word.
Best wishes for you blog.
Caroline.
Thanks Caroline and good luck with your blogs.
Hi Pippa, this is such an important and timely piece for us and the people who attend our group … we have a very good relationship with the local press and were recently asked to contribute an article about our work in arts and dementia – this seemed like a great opportunity to celebrate the work we were doing in the sessions and also articulate a more joyful image of those local people with dementia and memory problems living in the here and now, learning new things and becoming involved in exciting and uplifting activities e.g. with local school children. Our problems came when the article was handed over to the sub-eds who used the headline: “Dementia Patients celebrate …” under the strap-line “Ticking Timebomb!” this was wholly counter-productive and we very nearly lost a couple of group members who were so upset at the terminology used in the paper … we did manage to get the online edition corrected but so much education needs to happen if we are to present a more dignified and respectful picture of this condition and the people affected by it … http://www.halifaxcourier.co.uk/news/calderdale/people-living-with-dementia-unite-in-creative-art-1-6356977
Thanks Jeff. I want to take a longer look at your link when I have more time and will get back to you. It is good to share views.
The wonderful and creative approach you take to those living with dementia comes across really well in the article. I am sure that it did far more good than harm. Your group sessions sound completely inspirational. Well done and let’s keep in touch via Twitter.
thanks Pippa – I’ll give you a link to the sessions newsletter which shows the range of engaging opportunities we are developing over the next 6 months – trying as always to focus on the amazing things ‘we’ can do now, together.
The fallout from the newspaper article still affects some families and one of the most difficult tasks is how to balance ‘awareness-raising’ / publicity of the group and the concerns / anonymity of group members and families … we can only change negative perceptions via using the media but many families are frightened of any portrayal of their loved ones, and understandably so … http://issuu.com/verddegris/docs/newsletter
Thanks for the link Jeff. I am away now with intermittent use of internet but will take a good look on my return. The point you make about the tension between raising awareness and the sensitivities of those with dementia is very interesting and could apply to many conditions and sectors. I will explore further. Good luck with all you do – it’s brilliant and very worthwhile.