The #dementiawords we use matter

Dementia is being discussed more and more in the media and everyday life. But, says Philly Hare, the words we all use can affect how people with dementia feel about themselves, and how we all see dementia.

Today is the launch of a Call to Action on language and dementia. This call, a joint initiative between Dementia Engagement and Empowerment Project (DEEP) and the national Dementia Action Alliance (DAA), is hugely timely - dementia is being discussed more and more regularly. But we know (because people tell us) that the language we use to talk about people with dementia influences how they are viewed, and also how they feel about themselves.

The call draws on a DEEP Guide written by people with dementia, that sets out the words and descriptions that they would prefer are avoided. While some quite dramatic words and descriptions can be justifiable when used to create a good story and a sense of urgency, it is the phrases they describe as ‘curl up and die words’ that form the basis of this Call. This includes words such as ‘demented’, ‘sufferer’, ‘senile’ and ‘living death’. These are words that create stereotypes, that are negatively attached to the person rather than the condition, and that make them physically flinch. You can see people’s reactions to some examples of language by watching our short film

We all have responsibility to choose words and descriptions that are accurate, balanced and respectful – and which avoid the extreme and the sensationalist. We’re asking organisations (whether or not they are DAA members) to join us. The Call to Action – which runs for the next six months – asks you to commit to the three ‘C’s:

  • Check words and descriptions used in your printed materials, using the DEEP Guide.
  • Change any that people with dementia have identified as ones to avoid.
  • Challenge ‘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.