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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

DOI https://doi.org/10.2147/JMDH.S84069

Checked for plagiarism Yes

Review by Single-blind

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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