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This content is taken from the UCL (University College London) & Created Out of Mind's online course, Dementia and the Arts: Sharing Practice, Developing Understanding and Enhancing Lives. Join the course to learn more.

Skip to 0 minutes and 5 seconds There’s a big public debate around language and how we use language to talk about people living with dementia. And that exists within the public domain, within the platforms that serve the public– so social media platforms, Wikipedia, Twitter, Instagram– and also various arts organisations are working to try and inform that debate by working with people living with dementia. So DEEP, who are an organisation that look at how words are used, and they have a initiative called Words Matter, which looks at how media organisations and the public and the people that work with people with dementia talk about them, and it’s about informing that space through our public engagement platforms.

Skip to 0 minutes and 48 seconds So how can we enrich this narrative through curated events, through working with big influences, opinion leaders, the media, and help inform that debate? And for example, we say living with dementia as opposed to suffering from, which is a common term used in the media outlets that we work with. But that itself is the subject of debate on social media. There’s been a big debate at the moment led by Jeremy Vine and others which say actually ‘suffering from’ is an appropriate way to talk about the experience.

Skip to 1 minute and 21 seconds I think the main message is that the experience is so diverse and individual and that actually it’s important to say ‘living with dementia’ where we can because a lot of people feel comfortable with that terminology. But there will always be people that are not comfortable with that label, and we should make sure that the public debate is really informed by those lived experiences and those unique experiences that people are having and that we don’t act as an authority– we don’t act as an authority on the language that is used, but that we make sure that we’re giving a platform for the diverse dementia voices that we work with. I think the media and the public are not mutually exclusive.

Skip to 2 minutes and 4 seconds They feed into each other. And actually, it requires a real behavioural and cultural shift in the way people look at dementia first and that they are actually talking to people living with the condition. And once that happens, the media will I think follow.

The public debate about the language around the dementias

This step provides insight into the language that is used around dementia on various public platforms, and how it is beginning to shift.

Watch to hear Kailey Nolan explain:

  • How there has been an increase in the public debate that exists on various social media platforms that address the language that is used around the topic of dementia

  • Various arts organisations are working to inform the debate by working directly with people living with dementia, and by engaging the public

  • How the media and the public are not mutually exclusive, requiring a cultural shift to alter the way in which people living with dementias are perceived

You will be encouraged to think carefully about the terminology that is used to reflect an extremely broad range of lived dementia experiences.

CREDITS We would like to extend a special thank you to the following individuals and organisations for providing supplementary footage and images for this video: * Dementia Engagement and Empowerment Project (DEEP) * Ben Gilbert/ Wellcome.

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This video is from the free online course:

Dementia and the Arts: Sharing Practice, Developing Understanding and Enhancing Lives

UCL (University College London)