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dc.contributor.authorThorsen, Kirsten
dc.contributor.authorDourado, Marcia
dc.contributor.authorJohannessen, Aud
dc.date.accessioned2021-01-28T08:37:29Z
dc.date.accessioned2021-03-05T08:13:21Z
dc.date.available2021-01-28T08:37:29Z
dc.date.available2021-03-05T08:13:21Z
dc.date.issued2020-08-11
dc.identifier.citationThorsen, Dourado, Johannessen. Awareness of dementia and coping to preserve quality of life: a five-year longitudinal narrative study. International Journal of Qualitative Studies on Health and Well-being. 2020;15(1):1-14en
dc.identifier.issn1748-2623
dc.identifier.issn1748-2631
dc.identifier.urihttps://hdl.handle.net/10642/9872
dc.description.abstractPurpose: To examine how people (<65 years) with young-onset dementia (YOD) express awareness of dementia and how they seem to handle awareness as a strategy to preserve quality of life over time.Method: A longitudinal qualitative study with individuals with YOD was performed with interviews every 6 months over 5 years for a maximum of 10 interviews. The interviews were analysed by modified grounded theory adapted to narrative inquiry.Results: Awareness is a complex, multidimensional concept. Awareness of dementia is predisposed by personality, life history and established coping styles. The main coping styles during dementia—live in the moment, ignore the dementia, and make the best of it—seem to be rather consistent throughout disease progression. Transitions in the life situation may change the individual’s awareness of dementia.Conclusion: Unawareness of dementia may have an important adaptive function for preser-ving quality of life. Increasing awareness of dementia must be approached with reflexivity and great sensitivityen
dc.description.sponsorshipThe Research Council of Norway supported the study.en
dc.language.isoenen
dc.publisherTaylor & Francisen
dc.relation.ispartofseriesInternational Journal of Qualitative Studies on Health and Well-being;Volume 15, 2020 - Issue 1
dc.rightsCreative Commons Attribution 4.0 International (CC BY 4.0) Licenseen
dc.rights.urihttps://creativecommons.org/licenses/by/4.0/
dc.subjectAwarenessen
dc.subjectCopingen
dc.subjectDementiaen
dc.subjectYoung-onset dementiaen
dc.subjectLongitudinal studiesen
dc.subjectLife qualityen
dc.subjectQualitative narrative studies
dc.titleAwareness of dementia and coping to preserve quality of life: a five-year longitudinal narrative studyen
dc.typeJournal articleen
dc.typePeer revieweden
dc.date.updated2021-01-28T08:37:29Z
dc.description.versionpublishedVersionen
dc.identifier.doihttps://doi.org/10.1080/17482631.2020.1798711
dc.identifier.cristin1820518
dc.source.journalInternational Journal of Qualitative Studies on Health and Well-being


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