Talking our language

This Dementia Awareness Week, we’re trying to challenge the stigma and preconceptions people with dementia often face.
 

But you all look so normal!

From being mistaken as drunk, to being told by a consultant that they’re too young to have dementia – the stigma people with dementia have encountered can be difficult for them and their families. Members of the Scottish Dementia Working Group (SDWG) have always been candid with us - from ‘at least it’s not cancer’ to ‘but you look so normal’ – some of the things people have said has been really challenging for them to hear. We’ve also heard similar stories from carers, with members of the National Dementia Carers Action Network (NDCAN) sharing their perspectives on stigma. One carer told us how frustrating it was that friends and family stopped addressing her husband and directing questions to her. 

The ‘suffering from’ debate

The words we use when discussing dementia contribute significantly to how people with dementia are viewed in our society. We always want to be respectful when discussing people with dementia and avoid language that may have negative connotations. In the media we often hear people being referred to as ‘sufferers of dementia’, however this term can be stigmatising and is not everyone’s experience. For this reason, the preferred language when referring to those with a diagnosis is 'people with dementia'. We must also highlight the counter view on this – for some people, they feel like they are suffering, or they see their loved ones as suffering, as former carer Maureen expresses below. 

The ask of SDWG is that journalists and reporters refrain from using the term ‘suffering’ or ‘sufferers’. It can imply that the person should be pitied. It also suggests that dementia is the most important or relevant thing about that person, to the point where their own identity is completely overshadowed by it, as is reflected in the theme of this year's Dementia Awareness Week - 'One thing, not everything'.

Some thoughts from the SDWG and NDCAN
 

"The words 'suffering' and 'sufferers' are inaccurate and loaded with negative connotations. I’m not in pain, traumatised or depressed. I don’t need or want the sympathy those words provoke."

- Rynagh, person with dementia
 

"I dislike people speaking to me and not my husband as he is often able to answer, given a bit of time. When I am with him I can also anticipate difficulties and then intervene, if required.  I wish people understood that no two people with dementia are the same! Just because their Great Uncle Bert did/said XYZ, does not mean everyone does."

- Fiona, carer 

"A TV programme caught my eye – a Louis Theroux documentary entitled 'Louis meets dementia sufferers'. Oh, oh, I know some people that aren’t going to like that. One new thing that started during COVID was that the SDWG and NDCAN have joint online meetings, something that has really opened my eyes to other viewpoints about dementia. One thing that SDWG members often express an opinion on, is that word 'suffer'. In their eyes that word reinforces a stigma around dementia and the emphasis should rather be that you can live well with dementia. In my eyes my Mum, and her family, did suffer.  I have voiced my opinion, formed by personal experience, that sometimes people do suffer from dementia and we shouldn’t shy away from that."

- Maureen, former carer

"I do not believe that I am suffering dementia and would take issue with anyone who claimed that I am suffering. I may not be able to do the things that I took for granted before the onset of Alzheimer’s, but please don’t feel sorry for me or suggest I am suffering. My life has changed but not ended, I have found other outlets through which to channel my energies. Some ‘doors’ may have closed but others have opened to offer new opportunities."

- Margaret, person with dementia