Dementia words matter

October 2014

DEEP has published a new guide on the language used to describe dementia. The guide is intended for use by journalists, organisations and communications departments.

These recommendations were written by 20 people with dementia who came together for a day in Liverpool to discuss the words that are used about dementia.

The group felt that development of this guide was important.

Dementia is discussed more regularly now in the media – both on television and in newspapers and magazines. The language we use to talk about dementia influences how people with dementia are viewed and also how they feel about themselves. People with dementia prefer words and descriptions that are accurate, balanced and respectful.

Download the DEEP Guide – Language

Other guides from DEEP can be found on the DEEP guides page

Call to Action

On 20 March 2015, DEEP and the Dementia Action Alliance launched a Call to Action around language and dementia.

Find out more and sign up to support the call to action at the Dementia Action Alliance website


Barbara says:

I believe Dementia itself is a derogatory word – a “demented person” – conjuring up an image of someone with gnashing teeth, flailing about violently in a mad state. The term is outlawed in Japan. Memory problems/cognitive impairment is kinder & less dehumanising.

I would like some advice on what word to use instead of “burden.” In my research, we started to use “stress” as a replacement word, because burden has such a negative connotation (we used the Zarit Burden Interview). “Stress” doesn’t quite capture what we were trying to measure (as it is more on the effects of the stress than the stress itself), “strain” comes closer, but also seems to minimize the profound effects that care partners for someone with dementia experience (which are fairly well documented and distinctly different than care partners for other types of health conditions)…. I would really appreciate some suggestions and advice on this issue – not just for daily use, but also in research. Thank you!

Nada says:

Hi Carrie – I don’t think this campaign wants to be restrictive about words. For most people context in King. For me there is no denying that carers are stressed and there is a ‘burden of caring’. The problem comes when the language and thinking becomes sloppy and the implication is that it is the person with dementia who is the ‘burden’ – rather than the situation and responsibilities of caring. No-one wants to be thought of as a burden especially to a loved one. But many of the people we work with would totally understand that their families are upset, overworked, and stressed. What I think people with dementia would ask you as a researcher to make clear is that it’s not the person themselves who create this ‘burden’ but the condition of dementia. Does that make sense?

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