Language and Dementia: what’s the problem?

Today we have a guest blog by Kate Swaffer (@KateSwaffer) on (in)appropriate language use in dementia. Right in time for our #demphd chat today at 11 am British time! Your #demphd team ( Grant, Julie, Paul, Clarissa) 🙂

Dementia is heavily covered in the media. From Dementia Awareness Weeks to national guidelines and documentaries, dementia becomes ever more present in everyday life. With such a heavy media coverage of, it is likely that there are some issues that we people with dementia feel are inappropriate.

The problem is that too often, the rights of many people with dementia are not being respected when it comes to the way we are talked about, or referred to publicly, by people without dementia, such as journalists, health care professionals and care partners.

Yet again, during another two recent Dementia Awareness Weeks, we have been blitzed by articles and stories in the print, radio, television and online media about dementia, many of them negative, stigmatising and demeaning, and focused on our deficits. Even where there is a great story of people living beyond dementia and living well and doing amazing things, the editor insists on using ‘sufferer’ in the heading.

There have been some changes, as instead of only interviewing care partners of people with dementia, those of us diagnosed are being interviewed more often, telling our own stories. However, even when we request that words like ‘victim’ or ‘sufferer’ are not used in the articles, we are totally ignored and disrespected and the final copy usually includes at least one of these offensive words.

One of my favourite Australian music television programs, very recently referred to someone as ‘demented’, so they too have been sent the language guidelines. I imagine they will use them but so many tell me they won’t, as after all, ‘they are only guidelines’!

When people with dementia complain they have been offended and disrespected by the continuing use of terms like ‘dementia sufferer’, ‘suffering from dementia’, or being called ‘demented, we get the standard reply that it is not offensive to them, or their own mother or father suffered from dementia, so they have every right to use the term, and we have no right to ask they not use it.

They would not publicly call us retarded, I am 100% sure of that!

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…

In fact I believe that even people with dementia have no right to publicly label people with dementia as sufferers, even though we all suffer some of the time.

If it offends only ONE person with dementia to label them so negatively, then the use of these words in our own community needs to become private and respectful to those who find terms such as ‘sufferer’ offensive.

Chris Roberts, a person with dementia from Wales once vehemently said in a presentation, ‘Yes, of course I suffer some of the time… BUT DO NOT CALL ME A SUFFERER.’ To do so, also collectively suggests suffering is the sum total of our loved experience, which is wrong.  We watched him on the BBC documentary recently, where he and his wife and daughter bravely shared the darker side of Mr. Dementia living in their family, but I have spent many happy times with Chris, where neither of us were suffering at all, but laughing and having a wonderful time.

Having been a family care partner to three people who have died from dementia, one aged 57, I can honestly and definitively say my suffering was far greater watching them deteriorate and die, than my own suffering is now from having a diagnosis of dementia, even on the darkest of my days.

What I suffer from most of all now, is the disrespectful and offensive use of language in the public space, which wrongly implies suffering is all that is possible if you are diagnosed with a dementia. Thankfully, Dementia Alliance International is publishing it’s own Dementia Language Standards (not guidelines!) later this year, which will have been informed by a vast number of people from many countries around the world.

Kate