Living with dementia

Abstract

This article describes an ongoing interdisciplinary research study1 with community-dwelling people living with dementia. The article focuses on one person living with dementia, her family and support group. Seven people were interviewed and their stories woven into one narrative. Our interest is in her self-identity, which we explore through a participatory story-telling approach. In gathering stories with all people who are significant in her life we have observed that what is driving the stories is an ethical imperative that is shared across her social network. We have described this as an imperative to `curate' her self-identity. `Curation' combines telling `about', `for' and potentially `with' the person living with dementia in interactions which reproduce and reconfirm her self-identity. We propose that the notion of curation offers a way in which people, research participants, significant others and health care professionals, can think differently about living with dementia. In particular, we argue that curation enables the person to be acknowledged in interaction as an individual with a coherent, evolving identity which spans past, present and future.