Family relationships as a source of narrative identity of people with advanced dementia

Abstract

Background

The growing body of research on narrative identity, while helpful, rarely focuses on people with dementia. In this paper, we explore how individuals living with advanced dementia construct their narrative identities in relation to their family experiences, which play a crucial role in shaping identity as shown by recent studies.

Methods

We conducted a qualitative study using data from 15 semi-structured interviews with people aged 66 to 94 who have advanced dementia. The data were analyzed using a textual-oriented discourse analysis.

Results

We identified two discourses—autobiographical and economic—that organize their narrative identities. Through the autobiographical discourse, participants emphasized their sense of belonging within a social group and their role as custodians of family identity. Within the economic discourse, they negotiated their social utility and value, particularly in response to demeaning discourses targeting individuals who do not accumulate wealth. In the structural analysis, we identified two narrative types—looped or unfolding—that depend on their affective experiences related to their family. We especially explored how the repetition of narrative threads by individuals with dementia might indicate a traumatic background rather than just memory disruptions.

Conclusions

This study provides insights into the narrative identities of individuals with advanced dementia, shedding light on the intersection of family experiences and identity formation in this population.