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

References

• HarveyRJSkelton-RobinsonMRossorMNThe prevalence and causes of dementia in people under the age of 65 yearsJ Neurol Neurosurg Psychiatry20037491206120912933919
   PubMed Web of Science ®Google Scholar
• PrinceMBryceRAlbaneseEWimoARibeiroWFerriCPThe global prevalence of dementia: a systematic review and metaanalysisAlzheimers Dement2013916375.e223305823
   PubMed Web of Science ®Google Scholar
• EngedalKHaugenPKDemens Fakta og Utfordringer: En Lærebok [Dementia Facts and Demands]Tønsberg, NorwayForlaget Aldring og Helse2009 Norwegian
   Google Scholar
• van VlietDYoung Onset Dementia: Characteristics and Impact [dissertation]Maastricht, the NetherlandsDepartment of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience, Maastricht University2012
   Google Scholar
• SkovdalKPalo-BengtssonLAnttilaSYngre Personer med Demenssjukdom och Närstående Till Dessa Personer. En Kunnskapssammansettning [People with Early-Onset Dementia and their Relatives. A Summary of Knowledge]Institutet for utveckling av metoder i socialt arbete. 112-1Stockholm, SwedenSocialstyrelsen2007 Swedish
   Google Scholar
• SvanbergESpectorAStottJThe impact of young onset dementia on the family: a literature reviewInt Psychogeriatr201123335637120735892
   PubMed Web of Science ®Google Scholar
• HaugenKYngre personer med demens og deres familie: “Hjelpeapparatet er mangelfullt og tar ikke ansvar” [People with early-onset dementia and their relatives: “The healthcare services are inadequate and do not act with responsibility”]Demens2004822023 Norwegian
   Google Scholar
• HaugenPKEn må selv være pådriver: tilbud og mangel på tilbud til yngre personer med demensKrügerERMEvige Utfordringer: Helsetjenester og Omsorg for Eldre: Et Festskrift til Knut Engedal på 60-års Dagen [Eternal Challenges: Health Care and Care for the Elderly]Tønsberg, NorwayForlaget Aldring og helse20064662 Norwegian
   Google Scholar
• AllenJOyebodeJRAllenJHaving a father with young onset dementia: the impact on well-being of young peopleDementia200984455480
   Google Scholar
• Kjällman-AlmANorberghKGHellzenOWhat it means to be an adult child of a person with dementiaInt J Qual Stud Health Well-Being201382167624152431
   PubMed Web of Science ®Google Scholar
• BarcaMLThorsenKEngedalKHaugenPKJohannessenANobody asked me how I felt: experiences of adult children of persons with young-onset dementiaInt Psychogeriatr201426121935194424423756
   PubMed Web of Science ®Google Scholar
• MillenaarJKvan VlietDBakkerCThe experiences and needs of children living with a parent with young onset dementia: results from the NeedYD studyInt Psychogeriatr201426122001201024230480
   PubMed Web of Science ®Google Scholar
• GelmanCRGreerCYoung children in early-onset Alzheimer’s disease families: research gaps and emerging service needsAm J Alzheimers Dis Other Demen2011261293521282275
   PubMed Web of Science ®Google Scholar
• BorgMThe Nature of Recovery as Lived in Everyday Life: Perspectives of Individuals Recovering from Severe Mental Health Problems. [dissertation]. No. 110Trondheim, NorwayUniversity of Science and Technology2007
   Google Scholar
• JohannessenADementia and Public Health: With Focus on Access to Society [dissertation]. No. 6Gothenburg, SwedenNordic School of Public Health NHV2012
   Google Scholar
• EriksonEHIdentity and the Life Cycle. Psychological Issues. Monograph 1New York, NYInternational University Press1959
   Google Scholar
• EriksonEHIdentity: Youth and CrisisNew York, NYWW Norton1968
   Google Scholar
• KohutHThe Analysis of the SelfNew York, NYInternational Universities Press1971
   Google Scholar
• KohutHThe Restoration of the SelfNew York, NYInternational Universities Press1977
   Google Scholar
• KohutHOn the continuity of the self and cultural self objectsStrozierDCSelf Psychology and the Humanities: Reflections on a New Psychoanlaytic ApproachNew York, NYNorton1985232243
   Google Scholar
• StrattonPContemporary families as contexts for developmentsValsinerJConnollyKJHandbook of Developmental PsychologyLondon, UKSage Publications Ltd2003333357
   Google Scholar
• KindermanTChildren’s relationships and development of person–context relationsValsinerJConnollyKJHandbook of Developmental PsychologyLondon, UKSage Publications Ltd2003407430
   Google Scholar
• RicoeurPCzernyRThe Rule of Metaphor: The Creation of Meaning in LanguageLondon, UKRoutledge and Kegan Paul2003
   Google Scholar
• SpiggleSAnalysis and interpretation of qualitative data in consumer researchJ Consum Res1994213491503
   Web of Science ®Google Scholar
• StegerTThe stories metaphors tell: metaphors as a tool to decipher tacit aspects in narrativesField Methods2007191323
   Web of Science ®Google Scholar
• SontagSIllness as MetaphorNew York, NYFarrar, Strauss and Giroux1978
   Google Scholar
• MontagneMThe metaphorical nature of drugs and drug takingSoc Sci Med19882644174243363393
   PubMed Web of Science ®Google Scholar
• JohannessenAMöllerAHaugenPKBiongSA shifting sense of being: a secondary analysis and comparison of two qualitative studies on young-onset dementiaInt J Qual Stud Health Well-Being201492475625022268
   PubMed Web of Science ®Google Scholar
• LindsethANorbergAA phenomenological hermeneutical method for researching lived experienceScand J Caring Sci200418214515315147477
   PubMed Web of Science ®Google Scholar
• MishlerEGResearch Interviewing: Context and NarrativeCambridge, MAHarvard University Press1986
   Google Scholar
• LakoffGJohnsonMMetaphors We Live ByLondon, UKUniversity of Chicago Press2003
   Google Scholar
• SacksSOn MetaphorChicago, ILUniversity of Chicago Press1979
   Google Scholar
• KvaleSThe qualitative research interview: a phenomenological and a hermeneutical mode of understandingJournal of Phenomenological Psychology1983142171196
   Google Scholar
• KvaleSTo validate is to questionKvaleSIssues of Validity in Qualitative ResearchLund, SwedenStudentlitteratur19897392
   Google Scholar
• DenzinNKLincolnYSThe SAGE Handbook of Qualitative ResearchLondon, UKSage2005
   Google Scholar
• World Medical Association [webpage on the Internet]WMA Declaration of Helsinki – ethical principles for medical research involving human subjects. Ferney-VoltaireFranceWorld Medical Association2013 Available from: http://www.wma.net/en/30publications/10policies/b3/index.htmlAccessed December 4, 2014
   Google Scholar
• ArnettJJEmerging AdulthoodOxford, UKOxford University Press2004
   Google Scholar
• JohannessenAMöllerAExperiences of persons with early-onset dementia in everyday life: a qualitative studyDementia (London)201312441042424336952
   PubMedGoogle Scholar
• ShihMPositive stigma: examining resilience and empowerment in overcoming stigmaAnnals of the Academy of Political and Social Science20045911175185
   Web of Science ®Google Scholar
• BonannoGAUses and abuses of the resilience construct: loss, trauma, and health-related adversitiesSoc Sci Med201274575375622300714
   PubMed Web of Science ®Google Scholar
• SchankeAKThorsenKA life-course perspective on stigma-handling: resilience in persons of restricted growth narrated in life historiesDisabil Rehabil201436171464147324236494
   PubMed Web of Science ®Google Scholar
• AntonovskyAThe sense of coherence as a determinant of healthMatarazzoJDWeissSMHerdJAMillerNEWeissSMBehavioral Health: A Handbook of Health Enhancementand Disease PreventionNew York, NYWiley1984114129
   Google Scholar
• AntonovskyAHealth, Stress, and Coping: New Perspectives on Mental and Physical Well-BeingSan Francisco, CAJossey-Bass Publishers1985
   Google Scholar
• AntonovskyAUnraveling the Mystery of Health: How People Manage Stress and Stay WellSan Francisco, CAJossey-Bass Publishers1987
   Google Scholar
• CohenSWillsTAStress, social support, and the buffering hypothesisPsychol Bull19859823103573901065
   PubMed Web of Science ®Google Scholar
• CohenSGottliebBJUnderwoodLGSocial relationships and healthCohenSUnderwoodLGottliebBSocial Support Measurement and Interventions: A Guide for Health and Social ScientistsNew York, NYOxford University Press2000325
   Google Scholar
• SegrinCAge moderates the relationship between social support and psychosocial problemsHuman Communication Research2003293317342
   Web of Science ®Google Scholar
• ParkerRGParrottRPatterns of self-disclosure across social support networks: elderly, middle-aged, and young adultsInt J Aging Hum Dev19954142812978821240
   PubMed Web of Science ®Google Scholar
• GoldenMAWhaleyBBStoneAM“The system is beginning to shut down”: utilizing caregivers’ metaphors for dementia, persons with dementia, and caregivingAppl Nurs Res201225314615121439788
   PubMed Web of Science ®Google Scholar
• WertzFJCharmazKMcMullenLMJosselsonRAndersonRMcSpaddenEFive Ways of doing Qualitative Analysis: Phenomenological Psychology, Grounded Theory, Discourse Analysis, Narrative Research, and Intuitive InquiryLondon, UKThe Guilford Press2011
   Google Scholar
• MalterudKQualitative research: standards, challenges, and guidelinesLancet2001358928048348811513933
   PubMed Web of Science ®Google Scholar