Dementia: Words Matter

By Wendy Perry,  Dementia specialists from the Dementia Service Development Centre (DSDC) at the University of Stirling.

It is a bit disingenuous for me to use this title because my post isn’t about gossip, but it is about the words we use when we talk to others about dementia and about people living with dementia.  But I am also using it to make a point.

Not long ago I read an on-line conversation between dementia professionals about the importance of language. One professional had used some old culture language in reference to behaviour, and when questioned about it responded that she felt it was okay because she was trying to engage people on the topic by drawing them in with the language she was using.  Here is the problem with that practice: most people never look beyond the headline, which means that the overall impact of an article with a salacious title is the reinforcement of images like “dementia sufferer” or “death sentence” without actually engaging people about dementia in a way that challenges their current perceptions and expectations.

Terms such as ‘sufferer’ and ‘victim’ contribute to the stigma surrounding dementia while terms person/people with dementia or person/people living with dementia maintains the dignity of the person, emphasises that they are a person first and does not place judgements on the individual because they have dementia. Often people with dementia are referred to in a group as ‘they’ which loses sight of the individual and focuses on the condition.

When we change our language we make a commitment to do more than engage people about dementia – we engage people about dementia in a new way, a way that provides a more positive and hopeful view of living with dementia.  It is about proactively presenting ideas which illustrate that life with dementia can still be purposeful and rich in experience and meaning.  It is not without individual challenges, nor is it a condition most people would choose to experience, but until we learn to use language that supports the dignity and individuality of those who live with dementia, the level of stigma around having a diagnosis  will not improve.

Many of us do not possess the resources to change NHS or social care services, nor do we often have the opportunity to influence policy.  But every day we have the opportunity through our word choices to reduce the fear and the stigma around living with dementia.

Alzheimer’s Australia Dementia Language Guidelines suggests that appropriate language must be:

  • Accurate
  • Respectful
  • Inclusive
  • Empowering
  • Non stigmatising

For more about language and words used when talking about dementia read the guide from DEEP  Dementia words matter: Guidelines on language about dementia.


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