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What happens when people develop dementia whilst working? An exploratory multiple case study
This study is an in-depth exploration of the unfolding experiences of five persons who developed dementia while still in paid work/employment, and of their significant others. Namely, we explore how they experienced the actions and decisions taken with respect to work, and what the consequences mean...
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Published in: | International journal of qualitative studies on health and well-being 2023, Vol.18 (1), p.2176278 |
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creator | Nygard, Louise Nedlund, Ann-Charlotte Mäki Petäjä Leinonen, Anna Astell, Arlene Boger, Jennifer Issakainen, Mervi Engvall, Ann-Louise Heuchemer, Birgit Rosenberg, Lena Ryd, Charlotta |
description | This study is an in-depth exploration of the unfolding experiences of five persons who developed dementia while still in paid work/employment, and of their significant others. Namely, we explore how they experienced the actions and decisions taken with respect to work, and what the consequences meant to them.
A qualitative longitudinal case study design with multiple cases was used, including five participants with dementia and significant others of their choice. Interviews were undertaken longitudinally and analysed with the Formal Data-Structure Analysis approach.
The joint analysis resulted in two intertwined themes: 1) The significance and consequences of a dementia diagnosis: a double-edged trigger, and 2) Sensemaking and agency. The prevalent images of what dementia is, who can/cannot get it and what it will bring, were revealed as the critical aspects. Having the opportunity to make sense of what has happened and participate in decision-making, contributed decisively to the participants' experiences.
Findings illustrate how a dementia diagnosis is alien in work-life, but once diagnosed, it may trigger self-fulfiling expectations based upon stereotypical understanding of dementia. A shift is needed from a deficit-focused perspective, to viewing people with dementia as citizens capable of agency. |
doi_str_mv | 10.1080/17482631.2023.2176278 |
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A qualitative longitudinal case study design with multiple cases was used, including five participants with dementia and significant others of their choice. Interviews were undertaken longitudinally and analysed with the Formal Data-Structure Analysis approach.
The joint analysis resulted in two intertwined themes: 1) The significance and consequences of a dementia diagnosis: a double-edged trigger, and 2) Sensemaking and agency. The prevalent images of what dementia is, who can/cannot get it and what it will bring, were revealed as the critical aspects. Having the opportunity to make sense of what has happened and participate in decision-making, contributed decisively to the participants' experiences.
Findings illustrate how a dementia diagnosis is alien in work-life, but once diagnosed, it may trigger self-fulfiling expectations based upon stereotypical understanding of dementia. A shift is needed from a deficit-focused perspective, to viewing people with dementia as citizens capable of agency.</description><identifier>ISSN: 1748-2631</identifier><identifier>ISSN: 1748-2623</identifier><identifier>EISSN: 1748-2631</identifier><identifier>DOI: 10.1080/17482631.2023.2176278</identifier><identifier>PMID: 36799733</identifier><language>eng</language><publisher>United States: Taylor & Francis</publisher><subject>Accessibility ; accommodation ; agency ; Alzheimer's disease ; case study ; Decision making ; Dementia ; disclosure ; early onset ; Empirical Studies ; Employment ; Humans ; Medical diagnosis ; Medicin och hälsovetenskap ; Noncitizens ; Qualitative Research ; Sensemaking ; Significant others ; Stereotypes ; Stigma ; subjective experiences</subject><ispartof>International journal of qualitative studies on health and well-being, 2023, Vol.18 (1), p.2176278</ispartof><rights>2023 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. 2023</rights><rights>2023 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This work is licensed under the Creative Commons Attribution License http://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><rights>2023 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. 2023 The Author(s)</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c724t-3d71026f2720babe1caa51b62faed8337c7a11b3964db9071bf4d1e3f1d6b51a3</citedby><cites>FETCH-LOGICAL-c724t-3d71026f2720babe1caa51b62faed8337c7a11b3964db9071bf4d1e3f1d6b51a3</cites><orcidid>0000-0003-1813-7390</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.proquest.com/docview/2894622041/fulltextPDF?pq-origsite=primo$$EPDF$$P50$$Gproquest$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.proquest.com/docview/2894622041?pq-origsite=primo$$EHTML$$P50$$Gproquest$$Hfree_for_read</linktohtml><link.rule.ids>230,314,727,780,784,885,4024,12846,21394,21395,25753,27502,27923,27924,27925,30999,33611,33612,34530,34531,37012,37013,38516,43733,43895,44115,44590,53791,53793,59143,59144,74221,74412,74639,75126</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/36799733$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink><backlink>$$Uhttps://urn.kb.se/resolve?urn=urn:nbn:se:hj:diva-59920$$DView record from Swedish Publication Index$$Hfree_for_read</backlink><backlink>$$Uhttps://urn.kb.se/resolve?urn=urn:nbn:se:liu:diva-192303$$DView record from Swedish Publication Index$$Hfree_for_read</backlink><backlink>$$Uhttp://kipublications.ki.se/Default.aspx?queryparsed=id:152027850$$DView record from Swedish Publication Index$$Hfree_for_read</backlink></links><search><creatorcontrib>Nygard, Louise</creatorcontrib><creatorcontrib>Nedlund, Ann-Charlotte</creatorcontrib><creatorcontrib>Mäki Petäjä Leinonen, Anna</creatorcontrib><creatorcontrib>Astell, Arlene</creatorcontrib><creatorcontrib>Boger, Jennifer</creatorcontrib><creatorcontrib>Issakainen, Mervi</creatorcontrib><creatorcontrib>Engvall, Ann-Louise</creatorcontrib><creatorcontrib>Heuchemer, Birgit</creatorcontrib><creatorcontrib>Rosenberg, Lena</creatorcontrib><creatorcontrib>Ryd, Charlotta</creatorcontrib><title>What happens when people develop dementia whilst working? An exploratory multiple case study</title><title>International journal of qualitative studies on health and well-being</title><addtitle>Int J Qual Stud Health Well-being</addtitle><description>This study is an in-depth exploration of the unfolding experiences of five persons who developed dementia while still in paid work/employment, and of their significant others. Namely, we explore how they experienced the actions and decisions taken with respect to work, and what the consequences meant to them.
A qualitative longitudinal case study design with multiple cases was used, including five participants with dementia and significant others of their choice. Interviews were undertaken longitudinally and analysed with the Formal Data-Structure Analysis approach.
The joint analysis resulted in two intertwined themes: 1) The significance and consequences of a dementia diagnosis: a double-edged trigger, and 2) Sensemaking and agency. The prevalent images of what dementia is, who can/cannot get it and what it will bring, were revealed as the critical aspects. Having the opportunity to make sense of what has happened and participate in decision-making, contributed decisively to the participants' experiences.
Findings illustrate how a dementia diagnosis is alien in work-life, but once diagnosed, it may trigger self-fulfiling expectations based upon stereotypical understanding of dementia. A shift is needed from a deficit-focused perspective, to viewing people with dementia as citizens capable of agency.</description><subject>Accessibility</subject><subject>accommodation</subject><subject>agency</subject><subject>Alzheimer's disease</subject><subject>case study</subject><subject>Decision making</subject><subject>Dementia</subject><subject>disclosure</subject><subject>early onset</subject><subject>Empirical Studies</subject><subject>Employment</subject><subject>Humans</subject><subject>Medical diagnosis</subject><subject>Medicin och hälsovetenskap</subject><subject>Noncitizens</subject><subject>Qualitative Research</subject><subject>Sensemaking</subject><subject>Significant others</subject><subject>Stereotypes</subject><subject>Stigma</subject><subject>subjective experiences</subject><issn>1748-2631</issn><issn>1748-2623</issn><issn>1748-2631</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2023</creationdate><recordtype>article</recordtype><sourceid>0YH</sourceid><sourceid>7QJ</sourceid><sourceid>ALSLI</sourceid><sourceid>COVID</sourceid><sourceid>HEHIP</sourceid><sourceid>M2S</sourceid><sourceid>PIMPY</sourceid><sourceid>DOA</sourceid><recordid>eNqFkltv1DAQhSMEoqXwE0CReEFCu_gWO34BVuVWqRIvXF6QLCeedL114mAnXfbf43R3SxeJ8mRr5jvHk8zJsqcYzTEq0SssWEk4xXOCCJ0TLDgR5b3seKrPpsb9W_ej7FGMK4RYwTh_mB1RLqQUlB5nP74v9ZAvdd9DF_P1Erq8B987yA1cgfN9OlvoBqtT07o45GsfLm138SZfdDn86p0PevBhk7ejG-wkrHWEPA6j2TzOHjTaRXiyO0-yrx_efzn9NDv__PHsdHE-qwVhw4wagRHhDREEVboCXGtd4IqTRoMpKRW10BhXVHJmKokErhpmMNAGG14VWNOT7Gzra7xeqT7YVoeN8tqq64IPF0qHwdYOFFDBkhPRwCSrCyGZwBQnI0NFaSqUvGZbr7iGfqwO3Haly3QDxZjgEide_pPvgzd_RHshLtLKRFnc_dY7-21xPbmzo8KSUEQT__L__HKlCinJ5P56Sye0BVOnLQbtDgc86HR2qS78lZKScYomgxc7g-B_jhAH1dpYg3O6Az9GRYQoicBSTOjzv9CVH0OXlq5ImewIQWz6V8WWqoOPMUBzMwxGakq12qdaTalWu1Qn3bPbX3Kj2sc4AW-3gO0aH1qdMuqMGvQmpbMJuqttVPTuN34DE_UJNQ</recordid><startdate>2023</startdate><enddate>2023</enddate><creator>Nygard, Louise</creator><creator>Nedlund, Ann-Charlotte</creator><creator>Mäki Petäjä Leinonen, Anna</creator><creator>Astell, Arlene</creator><creator>Boger, Jennifer</creator><creator>Issakainen, Mervi</creator><creator>Engvall, Ann-Louise</creator><creator>Heuchemer, Birgit</creator><creator>Rosenberg, Lena</creator><creator>Ryd, Charlotta</creator><general>Taylor & Francis</general><general>Taylor & Francis Ltd</general><general>Taylor & Francis Group</general><scope>0YH</scope><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>0-V</scope><scope>3V.</scope><scope>7QJ</scope><scope>7RV</scope><scope>7X7</scope><scope>7XB</scope><scope>88E</scope><scope>8FI</scope><scope>8FJ</scope><scope>8FK</scope><scope>ABUWG</scope><scope>AFKRA</scope><scope>ALSLI</scope><scope>AZQEC</scope><scope>BENPR</scope><scope>CCPQU</scope><scope>COVID</scope><scope>DWQXO</scope><scope>FYUFA</scope><scope>GHDGH</scope><scope>HEHIP</scope><scope>K9.</scope><scope>KB0</scope><scope>M0S</scope><scope>M1P</scope><scope>M2S</scope><scope>NAPCQ</scope><scope>PIMPY</scope><scope>PQEST</scope><scope>PQQKQ</scope><scope>PQUKI</scope><scope>PRINS</scope><scope>7X8</scope><scope>5PM</scope><scope>AABRY</scope><scope>ADTPV</scope><scope>AOWAS</scope><scope>D8T</scope><scope>D8X</scope><scope>ZZAVC</scope><scope>ABXSW</scope><scope>DG8</scope><scope>DOA</scope><orcidid>https://orcid.org/0000-0003-1813-7390</orcidid></search><sort><creationdate>2023</creationdate><title>What happens when people develop dementia whilst working? An exploratory multiple case study</title><author>Nygard, Louise ; Nedlund, Ann-Charlotte ; Mäki Petäjä Leinonen, Anna ; Astell, Arlene ; Boger, Jennifer ; Issakainen, Mervi ; Engvall, Ann-Louise ; Heuchemer, Birgit ; Rosenberg, Lena ; Ryd, Charlotta</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c724t-3d71026f2720babe1caa51b62faed8337c7a11b3964db9071bf4d1e3f1d6b51a3</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2023</creationdate><topic>Accessibility</topic><topic>accommodation</topic><topic>agency</topic><topic>Alzheimer's disease</topic><topic>case study</topic><topic>Decision making</topic><topic>Dementia</topic><topic>disclosure</topic><topic>early onset</topic><topic>Empirical Studies</topic><topic>Employment</topic><topic>Humans</topic><topic>Medical diagnosis</topic><topic>Medicin och hälsovetenskap</topic><topic>Noncitizens</topic><topic>Qualitative Research</topic><topic>Sensemaking</topic><topic>Significant others</topic><topic>Stereotypes</topic><topic>Stigma</topic><topic>subjective experiences</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Nygard, Louise</creatorcontrib><creatorcontrib>Nedlund, Ann-Charlotte</creatorcontrib><creatorcontrib>Mäki Petäjä Leinonen, Anna</creatorcontrib><creatorcontrib>Astell, Arlene</creatorcontrib><creatorcontrib>Boger, Jennifer</creatorcontrib><creatorcontrib>Issakainen, Mervi</creatorcontrib><creatorcontrib>Engvall, Ann-Louise</creatorcontrib><creatorcontrib>Heuchemer, Birgit</creatorcontrib><creatorcontrib>Rosenberg, Lena</creatorcontrib><creatorcontrib>Ryd, Charlotta</creatorcontrib><collection>Taylor & Francis Open Access</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>ProQuest Social Sciences Premium Collection【Remote access available】</collection><collection>ProQuest Central (Corporate)</collection><collection>Applied Social Sciences Index & Abstracts (ASSIA)</collection><collection>Nursing & Allied Health Database (ProQuest)</collection><collection>Health & Medical Collection (Proquest)</collection><collection>ProQuest Central (purchase pre-March 2016)</collection><collection>Medical Database (Alumni Edition)</collection><collection>Hospital Premium Collection</collection><collection>Hospital Premium Collection (Alumni Edition)</collection><collection>ProQuest Central (Alumni) (purchase pre-March 2016)</collection><collection>ProQuest Central (Alumni)</collection><collection>ProQuest Central</collection><collection>Social Science Premium Collection</collection><collection>ProQuest Central Essentials</collection><collection>ProQuest Central</collection><collection>ProQuest One Community College</collection><collection>Coronavirus Research Database</collection><collection>ProQuest Central Korea</collection><collection>Health Research Premium Collection</collection><collection>Health Research Premium Collection (Alumni)</collection><collection>Sociology Collection</collection><collection>ProQuest Health & Medical Complete (Alumni)</collection><collection>Nursing & Allied Health Database (Alumni Edition)</collection><collection>Health & Medical Collection (Alumni Edition)</collection><collection>Medical Database</collection><collection>ProQuest sociology</collection><collection>Nursing & Allied Health Premium</collection><collection>Access via ProQuest (Open Access)</collection><collection>ProQuest One Academic Eastern Edition (DO NOT USE)</collection><collection>ProQuest One Academic</collection><collection>ProQuest One Academic UKI Edition</collection><collection>ProQuest Central China</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><collection>SWEPUB Högskolan i Jönköping full text</collection><collection>SwePub</collection><collection>SwePub Articles</collection><collection>SWEPUB Freely available online</collection><collection>SWEPUB Högskolan i Jönköping</collection><collection>SwePub Articles full text</collection><collection>SWEPUB Linköpings universitet full text</collection><collection>SWEPUB Linköpings universitet</collection><collection>DOAJ Directory of Open Access Journals</collection><jtitle>International journal of qualitative studies on health and well-being</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Nygard, Louise</au><au>Nedlund, Ann-Charlotte</au><au>Mäki Petäjä Leinonen, Anna</au><au>Astell, Arlene</au><au>Boger, Jennifer</au><au>Issakainen, Mervi</au><au>Engvall, Ann-Louise</au><au>Heuchemer, Birgit</au><au>Rosenberg, Lena</au><au>Ryd, Charlotta</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>What happens when people develop dementia whilst working? An exploratory multiple case study</atitle><jtitle>International journal of qualitative studies on health and well-being</jtitle><addtitle>Int J Qual Stud Health Well-being</addtitle><date>2023</date><risdate>2023</risdate><volume>18</volume><issue>1</issue><spage>2176278</spage><pages>2176278-</pages><issn>1748-2631</issn><issn>1748-2623</issn><eissn>1748-2631</eissn><abstract>This study is an in-depth exploration of the unfolding experiences of five persons who developed dementia while still in paid work/employment, and of their significant others. Namely, we explore how they experienced the actions and decisions taken with respect to work, and what the consequences meant to them.
A qualitative longitudinal case study design with multiple cases was used, including five participants with dementia and significant others of their choice. Interviews were undertaken longitudinally and analysed with the Formal Data-Structure Analysis approach.
The joint analysis resulted in two intertwined themes: 1) The significance and consequences of a dementia diagnosis: a double-edged trigger, and 2) Sensemaking and agency. The prevalent images of what dementia is, who can/cannot get it and what it will bring, were revealed as the critical aspects. Having the opportunity to make sense of what has happened and participate in decision-making, contributed decisively to the participants' experiences.
Findings illustrate how a dementia diagnosis is alien in work-life, but once diagnosed, it may trigger self-fulfiling expectations based upon stereotypical understanding of dementia. A shift is needed from a deficit-focused perspective, to viewing people with dementia as citizens capable of agency.</abstract><cop>United States</cop><pub>Taylor & Francis</pub><pmid>36799733</pmid><doi>10.1080/17482631.2023.2176278</doi><orcidid>https://orcid.org/0000-0003-1813-7390</orcidid><oa>free_for_read</oa></addata></record> |
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source | Applied Social Sciences Index & Abstracts (ASSIA); Taylor & Francis Open Access; Access via ProQuest (Open Access); Social Science Premium Collection; Sociology Collection; PubMed Central; Coronavirus Research Database |
subjects | Accessibility accommodation agency Alzheimer's disease case study Decision making Dementia disclosure early onset Empirical Studies Employment Humans Medical diagnosis Medicin och hälsovetenskap Noncitizens Qualitative Research Sensemaking Significant others Stereotypes Stigma subjective experiences |
title | What happens when people develop dementia whilst working? An exploratory multiple case study |
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