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Johannessen A, Engedal K, Thorsen K. Adult children of parents with young-onset dementia narrate the experiences of their youth through metaphors. J Multidiscip Healthc. 2015;8:245-54doi: 10.2147/JMDH.S84069.
Johannessen, A., Engedal, K., & Thorsen, K. (2015). Adult children of parents with young-onset dementia narrate the experiences of their youth through metaphors. Journal of multidisciplinary healthcare, 8245-54. https://doi.org/10.2147/JMDH.S84069
Johannessen, Aud, et al. "Adult children of parents with young-onset dementia narrate the experiences of their youth through metaphors." Journal of multidisciplinary healthcare vol. 8 (2015): 245-54. doi: https://doi.org/10.2147/JMDH.S84069
Johannessen A, Engedal K, Thorsen K. Adult children of parents with young-onset dementia narrate the experiences of their youth through metaphors. J Multidiscip Healthc. 2015 May 27;8:245-54. doi: 10.2147/JMDH.S84069. eCollection 2015. PMID: 26060403; PMCID: PMC4454217.
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J Multidiscip Healthc. 2015 May 27;8:245-54. doi: 10.2147/JMDH.S84069. eCollection 2015.

Adult children of parents with young-onset dementia narrate the experiences of their youth through metaphors.

Journal of multidisciplinary healthcare

Aud Johannessen, Knut Engedal, Kirsten Thorsen

Affiliations

  1. Vestfold Hospital Trust, Norwegian National Advisory Unit on Ageing and Health, Tønsberg, Norway.
  2. Vestfold Hospital Trust, Norwegian National Advisory Unit on Ageing and Health, Tønsberg, Norway ; University College of Oslo and Akershus, Oslo, Norway.

PMID: 26060403 PMCID: PMC4454217 DOI: 10.2147/JMDH.S84069

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".

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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