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Adult children of parents with young-onset dementia narrate the experiences of their youth through metaphors #MMPMID26060403
Johannessen A; Engedal K; Thorsen K
J Multidiscip Healthc 2015[]; 8 (ä): 245-54 PMID26060403show ga
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?. Conclusion: 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.