Reimagining the 'Lost' narratives of advanced dementia through literature and critical fabulation

Abstract

The progression of dementia significantly affects the abilities to communicate needs or experiences, often rendering the inner lives or narratives inaccessible to others. This increases the risk of narratives becoming 'lost' and people living with dementia becoming subject to narrative dispossession. However, even as communicative clarity diminishes, meaningful expressions persist, necessitating empathic and creative approaches to engaging with the narratives of people living with dementia. This paper outlines how the narrative agency of people living with dementia potentially diminishes as the condition progresses, making it increasingly challenging to access their personal narratives. It also explores a range of strategies for sustaining narrative expression, with particular emphasis on empathic narrative engagement - including the use of non-verbal communication, embodied interactions and interpretive practices. Emphasising the importance of engaging with the narratives of advanced dementia, the discussion frames narration as both an act of care and an ethical response to narrative silence. It advocates for imaginative engagement and highlights literature and storytelling as vital tools for understanding dementia. Autobiographical or fictional narratives by or about people with dementia offer profound insights into their experiences, fostering empathy and challenging reductive stereotypes. However, as people living with dementia approach the limits of their own narrative capacity, more speculative approaches become essential in reimagining their narratives to promote their narrative agency. To address this challenge, the paper introduces the concept of critical fabulation - a speculative yet empathic method for reimagining the narratives of advanced dementia - and argues for approaches that reconstruct lost or inaccessible narratives, bridging gaps where direct verbal communication is no longer possible.