Identity work of children with a parent with early-onset dementia in the Netherlands: Giving meaning through narrative construction

BACKGROUND: In the past years an increasing amount of research has been done on the experiences of adult children of a parent with early-onset dementia. However, little is still known about how the socio-cultural context influences the narratives of these children. AIM: This study aimed to provide insights into the far-reaching consequences of parental early-onset dementia for adult children in the Netherlands. It illustrates how the experiences of these adult children are shaped by the context they live in. METHOD: 16 in-depth interviews were conducted with adult children of a parent with early-onset dementia in the Netherlands. The interviews offered the children space to reflect on the impact the illness of their parent had on them and their lives. The data were analysed using thematic analysis. FINDINGS: This article illustrates that the comparative processes of relating to others' experiences help the children to reflect on the impact that their parent's illness has on their own lives, which in turn aids them in contextualising and making meaning out of their changing lives and relationships. This contextualization and recovery of meaning is shaped by three processes. The first concerns the ways these adult children draw comparisons between their own lives and experiences and those of their peers of the same age group. The second process entails comparative understandings of having a parent with early-onset dementia versus having a parent with late-onset dementia. The third process explores how having a parent with early-onset dementia compares to having a parent with other diseases. The processes of contextualisation which the adult children engage in are shaped by what the children perceive to be normal and thus also by their socio-cultural contexts. CONCLUSIONS: This article reveals how meaning is created in a constant interplay between the primary experiences of having an ill parent and the socio-cultural context in which the experiences take place. It illustrates how this context provides for particular narratives, which in turn shape how the children are able to give meaning to their experiences.