Hastings Center Report
Reliable Narrators of Experience: Rethinking Dementia Narratives from Insider Perspectives
Abstract: Cultural narratives about dementia reinforce the idea that people living with the condition are unreliable narrators of their own experiences. Challenges with recall and memory and changes in language that are commonly experienced by people living with dementia become equated to a loss of self. Since language is a shared space where people construct meaning through stories, stories that lack coherence or exhibit broken language are often discounted. To counter the notion that broken narratives reveal broken selves, I present a story by Marlene, a person living with dementia who recalled an encounter with a bobcat while on a camping trip. Rather than considering the veracity of her story, I focus on the importance of the emotions presented—the feeling self. Overall, I argue that by shifting focus from story challenges to expressed emotions, we are better positioned to understand and respect people living with dementia as authorities of their own experiences.
