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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 In the last five years, there has been a steady intensification of talk about dementia and about Alzheimer’s disease. And these two terms are often conflated without people necessarily realising that they refer to quite separate conditions. This talk has been found in an increase in films, in TV soap operas, in radio plays, in operas, in theatre plays, and even in pop music. There’s been an increase of talk about dementia in online media so it’s important not to forget that, too. So there have been blogs, and tweets, and apps. And importantly, that people with a dementia are beginning to talk and speak for themselves about their experiences of this condition. Famously, Terry Pratchett called his dementia an embuggeration.

Skip to 1 minute and 9 seconds Although, not everybody might use the same term. So I think that this talk has shaped our understanding of dementia and Alzheimer’s disease in different ways. In some ways, it’s added to a sense of an impending crisis. But in other ways– especially where we hear the voices of people with a dementia speaking for themselves– we’ve begun to have a slightly more nuanced understanding of the way that we can talk about and understand this condition. In contemporary narratives and maybe most especially in the media, there’s a tendency to talk about dementia in very dramatic terms. So it’s referred to as an epidemic. Words like tsunami are used. And the condition itself is almost changed into a kind of monstrous condition.

Skip to 2 minutes and 7 seconds And so other scholars– particularly someone called Susan Behuniak has talked about how we start to think about dementia as though it turns people into zombies or the living dead. And this effect makes us even more frightened about the condition. It also makes us feel powerless. It’s an epidemic so it’s something that we can do nothing about. And it also makes us feel that maybe pharmacological cures are the best way forward and that has tended to be the emphasis. The way that we talk about dementia is important because the way that we talk also shapes the way we think. And it also reflects the ways in which society reacts to a condition.

Skip to 3 minutes and 1 second So if we talk about dementia and Alzheimer’s disease in terms which are histrionic or dramatic– as an epidemic, as a rising tide, as a demon that steals at the heart of people, which is a quote from one of David Cameron’s speeches– then we are also shaping this condition into something that is very, very frightening and beyond our control. As opposed to something which we might be able to live with and what we can manage and that is not alien from us as human beings.

How different narratives influence our perceptions of the dementias

Dr Hannah Zeilig outlines the relationship between the language that is used within certain public narrative platforms (including language-based art forms) and the ways in which it shapes our perceptions and understanding of the dementias.

This includes:

  • How increasingly, through different communication channels, people with dementia are making their own voices be heard.

  • How, in contemporary narratives, dementia is usually talked about in dramatic terms.

  • Why there is importance attached to the way that we talk about the dementias, and what the impact of this can be.

How have you seen the dementias being described and depicted in public channels? Can you share examples of both positive and negative examples? Please do so in the comments below, or you can also share your examples in the Communal Pinboard at the end of the week.

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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)