Yet again, during another World Alzheimer’s Month, we have been blitzed by articles and stories in the print, radio and print media about dementia, many of them negative, stigmatising and demeaning, and focused on our deficits.
Yet again, many of the stories in the media have been of or by family care partners, researchers or health care professionals, taking about people with dementia, when the people who should be interviewed, are the people living with dementia themselves.
On World Alzheimer’s Day, the media should have been flooded with people with dementia, not people without dementia.
Sadly, it continues, far too often, to be “about us, without us”?
Yet again, people with dementia have been offended and insulted by the continuing use of terms like ‘dementia sufferer’, ‘suffering from dementia’, or being called ‘demented”. They would not call us retarded, we are 100% sure of that!
Yes, this happens even when the person being interviewed or who has set up the interview, has specifically asked the journalist NOT to use those terms.
I attended an event this week, where the journalist who was the MC, was given the dementia language guidelines ahead of the event, but still called us sufferers. When I spoke to her afterwards, she claimed she didn’t know about the guidelines. This is an all too common experience!
The journalists I know personally or have had online discussions with, all proclaim they are professional, yet far too many simply refuse to do the research about, and then actually bother to use, respectful dementia language.
As our advocacy organisations are pushing globally for dementia friendly communities, and using the media in part to promote these campaigns, the time is NOW, that everyone starts using respectful language.
These organisations must also insist the dementia language guidelines are referred to including in-house, if they really are advocating for people with dementia…
No-one can claim to be dementia friendly, if they continue to use language that disrespects the majority of us.
DAI wrote a blog about dementia and the media last year and other people with dementia have been writing about language this month as well.
One of our members who also blogs regularly, Wendy Mitchell in the UK wrote about the importance of language recently, worth reading.
Advocacy organisations all over the world are publishing their own dementia language guidelines. Let’s hope they use them…
Oddly, Dementia language guidelines have been in existence since as far back as 2008, and yet, the media, the public, the health care sector, researchers, and the organisations who say they advocate for us, are still mostly, not using them…
The most comprehensive guidelines are downloadable here:
Editor: Kate Swaffer
Copyright: Dementia Alliance International 2015