‘We can't keep going on like this’: identifying family storylines in young onset dementia

Abstract

ABSTRACTIn this study, we identify the dominant storylines that were embedded in the narratives of younger people with dementia and their nominated family members. By implementing a longitudinal, narrative design underpinned by biographical methods we generated detailed family biographies with five families during repeated and planned research contacts (N=126) over a 12–15-month period between 2009 and 2010. The application of narrative analysis within and between each family biography resulted in the emergence of five family storyline types that were identified as: agreeing; colluding; conflicting; fabricating; and protecting. Whilst families were likely to use each of these storylines at different points and at different times in their exposure to young onset dementia, it was found that families that adopted a predominantly ‘agreeing’ storyline were more likely to find ways of positively overcoming challenges in their everyday lives. In contrast, families who adopted predominantly ‘conflicting’ and ‘colluding’ storylines were more likely to require help to understand family positions and promote change. The findings suggest that the identification of the most dominant and frequently occurring storylines used by families may help to further understand family experience in young onset dementia and assist in planning supportive services.