Well today is World Alzhiemers Day! So I think it seems appropriate to talk once again about language.
I so often get upset, annoyed, frustrated, when the media refer to those of us living with dementia as ‘sufferers’ and speak of the epidemic etc etc.. I frequently rant and rave on Twitter and when I’m being interviewed I try and set the ground rules to ensure inappropriate language isn’t used..although I don’t always succeed.
But many people have asked me why do I get so incensed……….so here’s my explanation…..
A diagnosis of dementia is bad enough – that’s the devastating news. But that’s where negative language can stop and positive language begin. If someone tells you day after day that you’re a ‘sufferer’, you end up believing it. It has the same effect as someone telling you you’re stupid – if they continually say it, you end up believing it. It has a negative impact on your well being. We ‘struggle’ on a daily basis to outmanoeuvre the challenges we face but, often with help, we can find ways of overcoming those struggles.
In nearly every case where the word ‘sufferer’ has been used, it could be replaced simply by ‘living with’. By asking for this, I’m not denying or minimising the considerable challenges we face, I’m simply saying it sounds better.
The media are one guilty group but the other surprisingly are clinicians. We turn up at the Memory clinic and all so often are told that our mini mental score is reduced (a simple test we do on each visit to see how much less we can get right!)……how much better it would be to do the test, be given our score but then to be advised on ways we can compensate for the bits of our brain no longer playing ball……
Such advice would leave us less depressed about our continual decline which in turn affects our well being and outlook on life. Surely this would lead to less visits to the Gp and so a reduced cost to the NHS…………….doesn’t sound rocket science to me…….
Another thing that winds me up is when researchers or clinicians refer to my daughters as my carers…….grrrrrrrr – they’re my daughters and always will be. They may eventually be involved in my care but they will never stop being my daughters. I have a problem with ‘Carers’ Groups having the name but can’t think of an alternative….yet……..I’ll let you know when I have.
Kate Swaffer – wonderful Australian living with dementia – refers to her hubby as BUB – Back Up Brain – wonderful. My daughters are frequently my BUB…………….
So for anyone interested here’s a guide that was drawn up specifically for the media around words not to use.
Any Twitterers out there – please send a link to the guide when you see inappropriate language used in articles……….