Adult children of parents with young-onset dementia narrate the experiences of their youth through metaphors
Authors Johannessen A, Engedal K, Thorsen K
Received 5 March 2015
Accepted for publication 24 March 2015
Published 27 May 2015 Volume 2015:8 Pages 245—254
Checked for plagiarism Yes
Review by Single anonymous peer review
Peer reviewer comments 2
Editor who approved publication: Dr Scott Fraser
Aud Johannessen,1 Knut Engedal,1 Kirsten Thorsen1,2
1Vestfold Hospital Trust, Norwegian National Advisory Unit on Ageing and Health, Tønsberg, 2University College of Oslo and Akershus, Oslo, Norway
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.
Keywords: adult children, early-onset dementia, experiences, metaphors, services, support
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