Dementia Words Matter


A Call to Actionfrom people living with dementia.

Led jointly by DEEP & the Dementia Action Alliance

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

Why do we need a Call to Action?

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 wordsthat 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.

Will you join our Call to Action?

We recognise that it is going to take collective action to fundamentally change the choice of words that are used to describe dementia and its day to day experiences. We are asking member organisations of the Dementia Action Alliance and others to join us to take action about the use of language associated with dementia. We are really pleased that our guidelines on language have been used to challenge (and change) leading newspapers and television and radio coverage, and we would like to achieve more with your help.

Through this Call to Action 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 diewords 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.

Sign up here.

What else will this Call to Action do? 

  • The secretariat of the DAA will check through the Action Plans of all member organisations and request change where they find words that people with dementia have asked us all to be avoided. They will also make new members aware of the Call to Action and suggest they include it in their action plans
  • Awareness raising materials will be published and disseminated, to promote the issue of language around dementia
  • Tips and templates will be available to help people to take action when they encounter inappropriate language
  • A roundtable discussion will be organised with journalists and press officers to identify barriers to changing language
  • We will put examples of actions taken to challenge language (e.g. Tweets, letters to the editor, videos, blogs etc) on this webpage
  • A final document will be produced about language and dementia at the end of the Call to Action, aimed at journalists and press officers

Please use Twitter to spread the word. The hashtag is #dementiawords.