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Narrative and identity in Alzheimer’s disease: a case study
Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Health Sciences.ORCID iD: 0000-0002-3033-9879
Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Health Sciences.
2009 (English)In: Journal of Aging Studies, ISSN 0890-4065, E-ISSN 0890-4056, Vol. 23, no 4, 205-214 p.Article in journal (Refereed) Published
Abstract [en]

In this case study, focus is on how persons with AD use their remaining linguistic and cognitive resources, together with non-verbal aspects of the storytelling event, as resources in communicating and negotiating their identities in everyday encounters. The results of the analysis, focusing on the telling of the stories, indicate that other aspects than the temporal and referential organization of the narratives has become important resources for the teller in establishing and negotiating identity. The telling of temporally discontinuous narratives does not appear to affect or disrupt the teller's experience of some sort of a continuous sense of self and identity but are probably more a problem to persons without this kind of diagnosis. Being afflicted by AD most likely leads persons to try to invent and use alternative communicative recourses in order to sustain factors like their senses of self and identities. For researchers this makes it important to try to base their analysis on the actual organization of the talk and to focus on the functions of various responses and utterances in the interaction.

Place, publisher, year, edition, pages
2009. Vol. 23, no 4, 205-214 p.
Keyword [en]
identity, narrative, Alzheimer’s disease, performance, story-telling
National Category
Medical and Health Sciences
URN: urn:nbn:se:liu:diva-13253DOI: 10.1016/j.jaging.2008.01.001OAI: diva2:18143
Available from: 2008-05-06 Created: 2008-05-06 Last updated: 2014-08-27
In thesis
1. Fragile identities, patched-up worlds: Dementia and meaning-making in social interaction
Open this publication in new window or tab >>Fragile identities, patched-up worlds: Dementia and meaning-making in social interaction
2008 (English)Doctoral thesis, comprehensive summary (Other academic)
Alternative title[sv]
Fragila identiteter och en hoplappad värld : Demens och meningsskapande i socialt samspel
Abstract [sv]

Denna avhandling fokuserar på det meningsskapande och begripliggörande som fortgår vid tilltagande demenssjukdom, i det sociala samspelet, och de utmaningar för demens-omsorgen som detta innebär. Studien är aktörsorienterad och adresserar frågan om hur personer med åldersrelaterade progressiva demenssjukdomar i den vardagliga kommuni-kationen söker förstå sina situationer, omgivningen och sina liv – alltsammans inom ra-men för det dagliga samspelet på ett demensboende. Av särskilt intresse är hur dessa per-soner hanterar problem som har att göra med att handla tillsammans med andra i en gemensamt delad värld och hitta sin roll i det pågående samspelet, och hur de etablerar och upprätthåller en identitet i detta samspel. Detta trots svåra minnesproblem, desorien-tering i tid och rum, olika sätt att förstå den pågående situationen samt svårigheter att be-rätta om sina liv på ett sätt som både stämmer överens med biografiska data och har en tillfredsställande temporal organisering. Avhandlingen adresserar också frågan om hur omsorgspersonalen kan hantera det komplexa samspelet mellan de boende i den dagliga omsorgen, med avseende på att upprätthålla och respektera dessa personers värdighet.

Studien ansluter till en växande tradition av att studera interaktion vid demens som meningsbaserad och situerad i en kontext snarare än enbart som beteende som orsakas av kognitiva svårigheter. Metodologiskt är studien etnografisk och bygger på observationer fördelade över en tidsperiod av sex månader. Materialet, som består av ca 150 h videoma-terial och kompletterande fältanteckningar, möjliggör att samspelet studeras både i detalj och i relation till det större sammanhang som det ingår i.

Studien visar på kvarvarande kompetenser och bidrar med ny kunskap om strategier som personerna med demens använder sig av i ett aktivt, kreativt och på många sätt ratio-nellt meningsskapande i det sociala samspelet med andra människor. Detta diskuteras i termer av resurser för demensomsorgen i relation till den stora utmaning som det innebär att lappa ihop och upprätthålla en begriplig och socialt delad värld, samt upprätthålla kon-tinuitet med personernas livshistorier på ett sätt som möjliggör en önskad identitet.

Abstract [en]

This thesis focuses on the identity work and the meaning- or sense-making that continue in the face of evolving dementia diseases, in social interaction, and the challenges for care this involves. The study adopts an actor-oriented approach and addresses the question of how persons with age-related progressive dementia diseases in everyday communication make sense of their situations, their surroundings, and their lives – all within the context of daily life in residential care. Of particular interest is how these persons handle issues of joint action in a shared world and how they establish and maintain an identity in the inte-raction. This is in spite of severe memory problems, disorientation in time and space, dif-fering understandings of the current situation, and difficulties in telling “accurate” and temporally ordered stories about their lives. The thesis also addresses the question of how caregivers may handle the complex interplay between residents in daily care, in maintain-ing and respecting these persons’ dignity.

The study follows a growing tradition of studying interaction in dementia as mean-ing-based and situated in a context rather than merely as behavior caused by cognitive impairment. Methodologically, this is an ethnographic study based on observations made within a period of six months. The data consist of around 150 hours of video recordings and complementary field notes. This extensive material has made it possible to study the social interaction both in detail and situated in a larger context.

The findings point to remaining competences and strategies that persons with demen-tia use actively and creatively in the ongoing interaction – and, given the premises, often in a rational way. This is discussed in terms of resources for dementia care, in relation to the great challenge of patching up and putting together a comprehensive socially shared world as well as maintaining continuity with the persons’ previous life histories in a way that preserves a positive self-identity.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2008. 108 + papers A-D p.
Linköping Studies in Arts and Science, ISSN 0282-9800 ; 428Linköping Dissertations on Health and Society, ISSN 1651-1646 ; 12
Alzheimer’s disease, communication, confabulation, context, continuity, dignity, disorientation, ethnographic methods, ethnography, identity, life history, life story, meaning, microethics, narrative, progressive dementia diseases, sense-making, social interaction, storytelling, vascular dementia, Alzheimers sjukdom, berättande, desorientering, etnografiska metoder, identitet, kommunikation, konfabulering, kontext, kontinuitet, livsberättelse, mening, mikroetik, narrativ, progressiva demenssjukdomar, samspel, social interaktion, vaskulärdemens, värdighet
National Category
Communication Studies
urn:nbn:se:liu:diva-11736 (URN)978-91-7393-929-4 (ISBN)
Public defence
2008-04-25, Aulan, Hus 240, Campus US, Linköpings universitet, Linköping, 13:15 (English)
Available from: 2008-05-06 Created: 2008-05-06 Last updated: 2014-09-24Bibliographically approved

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Hydén, Lars-ChristerÖrulv, Linda
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