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smell as sweet

It's not the word 'dementia' itself which is stigmatising, but the words which are used around it

“the truth is dementia now stands alongside cancer as one of the greatest enemies of humanity”

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  • I think this is true of much discussion about medical conditions. Some of the words around prematurity are the same. I dislike “miracle” “weighing not even a bag of sugar” that sort of language isn’t helpful. Babies weighing less than 2lb aren’t miracles. I also dislike “fighter” these babies aren’t fighting, they are babies being treated in a medical setting. They may have been miracles once, but now it isn’t a miracle, it’s sound medical and family centred care practice that helps these babies survive and thrive.

    I feel there needs to be a much broader discussion about how we talk about medical conditions, disability and living well with all sorts of conditions.

    Thank you for this important blog post.

  • Great Blog Shibley.

    As you know – I spend a good deal of time talking about living well with dementia, and as you also know there are people who for a variety of reasons are uncomfortable and sometimes actively hostile to the idea that people can live well.

    My experience has been that the most common manifestation of this comes from people who have been through the mill as a carer of someone with dementia. In my experience the walls tend to come up when people feel that the positive message invalidates either their own experience as a carer, or that of the person they cared for.

    ……..and of course the constant negative language that surrounds dementia is a great way of reinforcing the view that people with dementia are helpless, hopeless victims that can never, almost by definition “live well”. So this hostility, based on the evidence personal experience and reinforced constantly by the media, not to mention others in the dementia “world” is an incredibly hard nut to crack.

    But we must.

    Former carers have huge potential as allies of the dementia “movement” so wonderfully represented by DAI – and we need to find ways to get them and keep them onside through an approach that encourages them to see the potential of a positive approach, whilst at the same time respecting and honouring their experience and that of the people with dementia they have cared for.