Narratives-in-action of people with moderate to severe dementia in long-term care: Understanding the link between occupation and identity

Abstract

Meaningful occupation is a frequently stated part of person-centred care, but that need is often unmet in long-term care (LTC) settings. There is little in literature about the perspective of people with moderate and severe dementia on their identity construction and social roles. This study deals with the following question: how do men and women with moderate to severe dementia living in long-term care maintain aspects of their identities and social roles? It also gives insight into the application of a narrative-in-action approach with people with advanced dementia. Using a qualitative research design in the ethnographic tradition, observations, interviews and informal talks whilst doing occupations with people with dementia and their carers were used for data collection in two institutions. A narrative analysis based on a narrative-in-action approach was applied. The findings show the efforts of people with dementia doing “identity work” in a confining environment. They used narratives, objects, and occupations to express their identities despite their cognitive or physical impairments. The narrative-in-action approach offers the potential to better understand the perspective of people with dementia who have problems expressing themselves verbally. Even though they are fragmented, repeated stories have an important function in constructing identity and should not be regarded merely as a symptom of dementia. This study allows for a better understanding of the relationship between occupation, its symbolic meaning, and identity in people with advanced dementia.