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

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 child...

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Autores principales: Johannessen, Aud, Engedal, Knut, Thorsen, Kirsten
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Dove Medical Press 2015
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4454217/
https://www.ncbi.nlm.nih.gov/pubmed/26060403
http://dx.doi.org/10.2147/JMDH.S84069
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author Johannessen, Aud
Engedal, Knut
Thorsen, Kirsten
author_facet Johannessen, Aud
Engedal, Knut
Thorsen, Kirsten
author_sort Johannessen, Aud
collection PubMed
description 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.
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spelling pubmed-44542172015-06-09 Adult children of parents with young-onset dementia narrate the experiences of their youth through metaphors Johannessen, Aud Engedal, Knut Thorsen, Kirsten J Multidiscip Healthc Original Research 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. Dove Medical Press 2015-05-27 /pmc/articles/PMC4454217/ /pubmed/26060403 http://dx.doi.org/10.2147/JMDH.S84069 Text en © 2015 Johannessen et al. This work is published by Dove Medical Press Limited, and licensed under Creative Commons Attribution – Non Commercial (unported, v3.0) License The full terms of the License are available at http://creativecommons.org/licenses/by-nc/3.0/. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed.
spellingShingle Original Research
Johannessen, Aud
Engedal, Knut
Thorsen, Kirsten
Adult children of parents with young-onset dementia narrate the experiences of their youth through metaphors
title Adult children of parents with young-onset dementia narrate the experiences of their youth through metaphors
title_full Adult children of parents with young-onset dementia narrate the experiences of their youth through metaphors
title_fullStr Adult children of parents with young-onset dementia narrate the experiences of their youth through metaphors
title_full_unstemmed Adult children of parents with young-onset dementia narrate the experiences of their youth through metaphors
title_short Adult children of parents with young-onset dementia narrate the experiences of their youth through metaphors
title_sort adult children of parents with young-onset dementia narrate the experiences of their youth through metaphors
topic Original Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4454217/
https://www.ncbi.nlm.nih.gov/pubmed/26060403
http://dx.doi.org/10.2147/JMDH.S84069
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