Dementia Matters in Powys

Dementia Words Matter

Dementia Words Matter - A ‘Call to Action’ from people living with dementia.

“Words are very powerful – they can build you up or put you down. When you are speaking about dementia remember this.” Agnes Houston, person with dementia

Dementia is discussed more regularly now, in the media - both on television and in newspapers and magazines -and in everyday life. The language we use to talk about dementia influences how people with dementia are viewed and also how we feel about ourselves. We prefer words that are accurate, balanced and respectful.

Many of us have talked about these words at events organised by DEEP. We made a distinction between a) extreme and ‘sensationalist’ language choices and b) language which is accurate in the information it seeks to share.

Dementia Words Matter” is a DEEP Guide, written by people with dementia, that sets out the words and descriptions of dementia that we would prefer are avoided. We recognise that some quite dramatic words and descriptions can be justifiable when used to create a good story and a sense of urgency. On these occasions, we hope that evocative language is used thoughtfully and with consideration.

However, it is the words that we describe as ‘curl up and die words’ that particularly form the basis of this Call to Action. This includes words such as ‘demented’, ‘sufferer’, ‘senile’ and ‘living death’. These are words that make us physically flinch when we hear them, that create stereotypes, and that are negatively attached to the person rather than the condition.

We ask you/your organisations to commit to the three ‘C’s:

Check words and descriptions used in your printed materials against the DEEP Guide

Change any words and descriptions that people with dementia have identified as ones to avoid

Challenge words which you recognise as our ‘curl up and die’ words whenever you see or hear them - in newspapers, on TV, on websites and in conferences and meetings. And pass on the challenge to others to take forward in their own settings.