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Fragile identities, patched-up worlds: Dementia and meaning-making in social interaction
Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Arts and Sciences.
2008 (English)Doctoral thesis, comprehensive summary (Other academic)Alternative title
Fragila identiteter och en hoplappad värld : Demens och meningsskapande i socialt samspel (Swedish)
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.
Series
Linköping Studies in Arts and Science, ISSN 0282-9800 ; 428Linköping Dissertations on Health and Society, ISSN 1651-1646 ; 12
Keyword [en]
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
Keyword [sv]
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
Identifiers
URN: urn:nbn:se:liu:diva-11736ISBN: 978-91-7393-929-4 (print)OAI: oai:DiVA.org:liu-11736DiVA: diva2:18145
Public defence
2008-04-25, Aulan, Hus 240, Campus US, Linköpings universitet, Linköping, 13:15 (English)
Opponent
Supervisors
Available from: 2008-05-06 Created: 2008-05-06 Last updated: 2014-09-24Bibliographically approved
List of papers
1. Confabulation: sense-making, self-making and world-making in dementia
Open this publication in new window or tab >>Confabulation: sense-making, self-making and world-making in dementia
2006 (English)In: Discourse Studies, ISSN 1461-4456, Vol. 8, no 5, 647-673 p.Article in journal (Refereed) Published
Abstract [en]

This study is concerned with the productive aspects of confabulation as it occurs spontaneously in dementia care, in its context, and in interaction with other care recipients. Confabulation is approached as a social and discursive event with distinct narrative features; plots and formerly established genres of plots, storylines, are used by confabulators in order to understand, manage and interact socially in the present situation. Three main functions of confabulation are discerned: 1) making sense of the current situation (sense-making); 2) maintaining a personal identity in interaction with others (self-making); and 3) organizing and legitimizing joint action in the world (world-making). The resources used by confabulating subjects are sparse and not well adjusted to changing conditions, as the number of accessible storylines is limited. This makes it difficult to apply storylines that explain the current situation satisfactorily, provide useful guidelines for how to act, as well as preserve a positive self-identity. Helping with this constitutes a major challenge in dementia care.

Keyword
Alzheimer’s disease, communication, confabulation, context, dementiam, ethnography
National Category
Communication Studies
Identifiers
urn:nbn:se:liu:diva-13251 (URN)10.1177/1461445606067333 (DOI)
Available from: 2008-05-06 Created: 2008-05-06 Last updated: 2013-09-04
2. Placing the place, and placing oneself within it: (dis)orientation and (dis)continuity in dementia
Open this publication in new window or tab >>Placing the place, and placing oneself within it: (dis)orientation and (dis)continuity in dementia
2010 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 9, 21-44 p.Article in journal (Refereed) Published
Abstract [en]

Disorientation as experienced by persons with progressive dementia diseases involves both existential and social dimensions. Based on video observations from a small residential care unit and exploring social interaction on a micro-level, this case study focuses on how a woman with vascular dementia actively tries to make sense of an everyday lunch situation. The analysis addresses strategies used by her to contextualize where she has ended up, and also how the meaning of the place is altered in communication. Findings point to social interaction between residents as an important resource to help maintain continuity with previous social life. However, there also seems to be an impending need for caregivers to help residents patch up their broken life-stories to render everyday situations comprehensible and the setting socially meaningful. Helping them find a way of placing themselves within it — also affording a positive self-identity and continuity with previous life history — is a major challenge in daily care.

Place, publisher, year, edition, pages
Sage Publications, 2010
National Category
Social Sciences
Identifiers
urn:nbn:se:liu:diva-13252 (URN)10.1177/1471301210364449 (DOI)
Available from: 2008-05-06 Created: 2008-05-06 Last updated: 2017-12-13Bibliographically approved
3. Narrative and identity in Alzheimer’s disease: a case study
Open this publication in new window or tab >>Narrative and identity in Alzheimer’s disease: a case study
2009 (English)In: Journal of Aging Studies, ISSN 0890-4065, E-ISSN 1879-193X, 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.

Keyword
identity, narrative, Alzheimer’s disease, performance, story-telling
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-13253 (URN)10.1016/j.jaging.2008.01.001 (DOI)
Available from: 2008-05-06 Created: 2008-05-06 Last updated: 2017-12-13
4. Dignity work in dementia care: Sketching a microethical analysis
Open this publication in new window or tab >>Dignity work in dementia care: Sketching a microethical analysis
2007 (English)In: Dementia: the International Journal of Social Research and Practice, ISSN 1471-3012, Vol. 6, no 4, 507-525 p.Article in journal (Refereed) Published
Abstract [en]

This study is concerned with issues of dignity in dementia care, in situations where staff members handle potential or actual conflicts and interaction problems between residents. Based on empirical data consisting of observations and video recordings, various coping strategies are identified in regard to whether or not, as well as when and how to interfere. Microethical analysis is used in order to discuss these coping strategies in relation to contextual conditions and ways of understanding, and values or aspects of dignity are highlighted. In dialogue with empirical data, nuances of ethical considerations are approached that are otherwise difficult to access analytically — thereby opening the door to a more reflective way of dealing with problematic situations in dementia care.

Keyword
coping strategies • conflict solving • ethics • ethnography • microethics
National Category
Social Sciences
Identifiers
urn:nbn:se:liu:diva-13254 (URN)10.1177/1471301207084368 (DOI)
Available from: 2008-05-06 Created: 2008-05-06 Last updated: 2009-03-09Bibliographically approved

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