Narrative identity work in couples living with dementia: A relevant perspective for social work practice

Background: There has been a shift in dementia care all over the western world, putting the experiences and needs of the person with dementia in focus in the so called person centered care. One part of caring for a person with... [ view full abstract ]

Background: There has been a shift in dementia care all over the western world, putting the experiences and needs of the person with dementia in focus in the so called person centered care. One part of caring for a person with dementia is to help him/her to remember and to express individual identity, however for many people the relationship and the couple-identity that they share with a spouse is equally important. Person centered care entails relational aspects in theory, but in social work practice it can often be neglected.

Aim: The presentation will address narrative identity work and positioning in time of dementia, mainly from a relational perspective. This is done through the lens of Hilde Lindemann´s theory on “holding in identity” with an extra focus on inter-related aspects of holding. I will suggest that holding in identity can be reciprocal in the sense that both healthy spouse and spouse with dementia occasionally will need to be held. Issues regarding relational aspects of identity work in time of dementia have yet received little attention in social work research.

Method: Twelve video-recorded interviews with couples living with dementia were analyzed using positioning theory. Narratives important for individual as well as relational identity by and about both spouses were analyzed.

Preliminary findings: The results suggests that healthy spouses are good at holding their spouse with dementia in identities that enhance agency and competency. The spouses often express their couple-identity as being ordinary and even “better off than many others”. Narratives regarding changes due to dementia are negotiated and sometimes rejected by the person with dementia.

Implications: The presentation will contribute to the debate on narrative identity work and dementia. The experiences from identity work for couples dealing with dementia can be seen as useful tools in social work practice.