title: Adult children of parents with young-onset dementia narrate the experiences of their youth through metaphors.
abstract: BACKGROUND
  Limited research exists on the development and needs of children of parents with young-onset dementia (YOD) (<65 years old). There is scarce knowledge of how these children experience the situation of growing up with a parent with dementia. This study investigates the stories of children of persons with YOD and interprets their metaphorical expressions of their experiences as a source of understanding their situation and needs during the development and course of their parent's dementia.
  
  
  METHODS
  Qualitative interviews with 14 informants (aged 18-30 years; nine daughters, five sons) were conducted in 2014 and subsequently analyzed by the informants' use of metaphors. Steger's three-step method for analyzing metaphors was applied.
  
  
  RESULTS
  The analysis identified four themes in the metaphors: the informants' relations to the disease, to the self, to the parent, and to others. From these themes, four core metaphors were abstracted: "my parent is sliding away"; "emotional chaos"; "becoming a parent to my parent"; and "a battle".
  
  
  CONCLUSIONS
  The study revealed that growing up with a parent with dementia has a great impact on the children's situation and their experiences of their personal development. Children of a parent with YOD are a group with unmet needs for support. A formalized system where the children can get into contact with service providers to receive tailored information and individual follow-up needs to be established. The service providers must listen to the children's stories, perceive how metaphors convey their experiences, and recognize their need for support for their own development.
authors.affiliation: Vestfold Hospital Trust, Norwegian National Advisory Unit on Ageing and Health, Tønsberg, Norway.
authors.forename: Aud
authors.initials: A
authors.lastname: Johannessen
authors.affiliation: Vestfold Hospital Trust, Norwegian National Advisory Unit on Ageing and Health, Tønsberg, Norway.
authors.forename: Knut
authors.initials: K
authors.lastname: Engedal
authors.affiliation: Vestfold Hospital Trust, Norwegian National Advisory Unit on Ageing and Health, Tønsberg, Norway ; University College of Oslo and Akershus, Oslo, Norway.
authors.forename: Kirsten
authors.initials: K
authors.lastname: Thorsen
keywords: adult children; early-onset dementia; experiences; metaphors; services; support