Dementia Fiction: Giving Voice to an Experience beyond Language

Abstract

Stories about dementia have ethical implications. Both cultural and fictional narratives about this disease have the potential to strengthen the fear and disgust that often surrounds it. This in turn can impact the way people living with dementia are viewed and treated. While there has been much criticism of de-humanising, biomedical approaches and much focus on the implications of language used in cultural narratives, the fact remains that dementia is a devastating degenerative disease. In light of this, how can stories and storytelling contribute towards assembling ‘a new humanity in the loss’ , inspiring empathy and hope, without effacing the painful reality of the condition? I will attempt to answer this question by telling the story of my own creative process in writing a novel as part of my PhD thesis that is partly narrated by a character with dementia. By reflecting on the experiences that inspired my fictional narrative, and the ethical and aesthetic challenges that I faced along the way, I will argue that narrative does have an important role to play in re-visioning the lived experience of dementia and the way we approach care and support. I will draw on critics from the fields of literary disability studies and medical humanities to support my argument. Furthermore, in using creative non-fiction to express my ideas, I hope to show not only that stories can help us to re-imagine and re-characterise dementia, but also, as David Herman asserts, that ‘narrative itself can work to readjust the contextual parameters in terms of which people produce and understand stories.