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Representing dementia

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communication, dementia awareness, education and training, research

Dementia is certainly a growing social concern, and is increasingly discussed and portrayed in newspapers, government speeches, policy documents, films, books and more. Despite this, a lot of misunderstanding, fear and stigma still surrounds the experience of dementia, and so when it came to choosing a topic for my Masters dissertation, and later my PhD thesis, I wanted to explore the interaction of public conceptions with how dementia is represented. I’m particularly interested in how people living with dementia, and dementia more broadly, are represented in society through the words, format choices and images used. The importance of such representations is frequently overlooked, yet they have strong accumulative power, and can provide valuable insights into underlying attitudes and ideologies about dementia.

For instance, in a quick search for images of dementia, taking a look at the first ten pictures to appear indicates that the dominant view of dementia focuses on deterioration of a person, through decreasing brain function (see the pictures above). The idea seems to be that someone with dementia crumbles away. Consider how this makes you personally feel about dementia, and about others who live with it. Do presentations such as these help contribute to fear and stigma, and the consideration (and often treatment) of people with dementia as non-people?  

As well as deterioration of self, a biomedical focus is also evident, displaying types of dementia, risk prevention strategies and a comparison of physical changes in the brain for a stroke and dementia. There are certainly no photographs of people with dementia enjoying life, spending time with family and engaging with their environment, despite the recent emphasis on the fact that people can live well with dementia. Suggestions for other search terms link dementia to hearing loss and memory loss, but also to depression, delirium and psychosis, further promoting a fear-inducing narrative of dementia, rather than, for instance, signalling avenues of support. These linguistic and visual choices not only reflect, but also help shape, the way we think about dementia – making them a valuable avenue for change, to reduce fear and stigma, and improve the experience that people can have of dementia.

For my Masters dissertation, I compared two short videos for different charity campaigns, Alzheimer Society’s Dementia Friends (https://www.youtube.com/watch?v=TuPWBlmD5Tk&t=11s), and Alzheimer’s Research UK’s Santa Forgot (https://www.youtube.com/watch?v=Y9pd6F7Wojk&t=8s), to consider how they both visually and linguistically represent dementia. Through interviews, I also investigated how the videos were received by members of the public, particularly how they reflected, reinforced and challenged the participants’ dementia perceptions. This was a bit like dipping my toe in the water, and raised as many questions as it answered about dementia representations and perceptions.

Building upon this, for my PhD, I hope to explore how dementia has been portrayed since 2012 to the British public, when the World Health Organisation made dementia a public health priority, and David Cameron challenged England to become world-leading in dementia research and care. How do politicians, governmental departments and non-profit organisations engage with popular perceptions of dementia? What relationship do they have to the presentations spread throughout the British press? What do members of the public, including people with dementia, think of some of the linguistic and visual portrayals in my study? And how can dementia representations be improved? These are some of the many questions I hold going into the first few weeks of my PhD, and I’m excited to find out where these questions will take me.

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