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Dementia and Identity

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Topics: 
approaches to dementia care, communication, dementia awareness, research

As a first year PhD student at the University of Nottingham, I initially became interested in researching dementia when I was exploring topics for my Masters dissertation. I was curious about issues of representation and stigma, particularly with the idea that some groups of people appear to have less of a voice than others. It wasn’t long before I came across the work of Hannah Zeilig, whose brilliant exploration of metaphor and dementia highlighted many of the issues surrounding the ways that dementia, and individuals with dementia, are represented.

Based primarily in the School of English, with a secondary base in the Institute of Mental Health, my PhD aims to compare data from the media and from online forums for people with dementia, to understand how identity in dementia is constructed and what this reveals about attitudes towards people with dementia.

The messages perpetuated in the media and popular culture tout the idea that dementia causes a ‘living death’ and leads to an ‘empty shell’ of a person. This is problematic because a person with dementia is therefore seen as a non-person, lacking a sense of self or individuality. And decades of dementia research has shown that this attitude leads to inadequate care practices.

On the contrary, provisional research undertaken for my Masters dissertation has shown that there are multiple ways that users of an online forum for people with dementia can construct and maintain identity. This might be by giving dementia a colloquial nickname – ‘Alz’ – or by viewing dementia as an external force outside the body – ‘The disease is the enemy, not you’. Using online forums as a data source means the data is naturally occurring and spontaneous, so as to give a real insight into the first-hand experiences of dementia.

There is much work to be done in understanding how identity can be facilitated and maintained as dementia progresses, and I hope that the linguistic perspective of my research will offer novel ways of addressing these issues to improve standards of care and representation.

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