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Nilsson, Elin
Publications (5 of 5) Show all publications
Nilsson, E. (2018). Facing dementia as a we: Investigating couples’ challenges and communicative strategies for managing dementia. (Doctoral dissertation). Linköping: Linköping University Electronic Press
Open this publication in new window or tab >>Facing dementia as a we: Investigating couples’ challenges and communicative strategies for managing dementia
2018 (English)Doctoral thesis, comprehensive summary (Other academic)
Alternative title[sv]
Att möta demens som ett vi : En undersökning av pars utmaningar och kommunikativa strategier för att hantera demenssjukdom
Abstract [en]

We live longer than ever before, which means that we also live longer with disorders such as those connected with dementia. Most people diagnosed with dementia live in ordinary housing for a long time, relying on their social network for support, mainly involving spouses or adult children. There is limited research on how families and couples manage daily life with dementia, and social workers may only have knowledge and skills at a general level about older people with the condition.

The aim of this thesis is to investigate how couples manage dementia-related challenges, as well as whether and how these challenges and ways of managing relate to aspects of couples’ we-ness. This aim has been specified in terms of research questions which involve the couples’ communicative management of dementia-related challenges, and how they approach and talk about sensitive topics connected with dementia. An additional question involves how the couples relate to and use their we-ness in managing dementia. Multimodal conversation analytic theory and methodology has been adopted to study sequences from 15 video-recorded joint interviews involving couples where one of the partners had a diagnosis of dementia.

The articles demonstrate how the spouses managed dementia jointly, and how they used their common ground as a couple as an important resource for telling stories and remembering. When the spouses without dementia approached sensitive topics related to dementia, they made use of strategies such as mitigating talk, or touching the partner with dementia as they spoke. The spouses without dementia approached the issue of the future carefully, whereas the spouses with dementia were more direct in the way they talked about the future. A final finding involves the spouses without dementia using strategies such as giving clues or prompting to help their partner with dementia remember. However, this was seldom successful, and may even have had face-threatening effects. Taken together, the different aspects of this thesis emphasise the challenges faced by the couples and the communicative strategies they used, as well as the abilities and agency which surfaced during a micro-level analysis of their interaction. The results are further discussed in the light of implications for social work education, practice and theory, largely highlighting the importance of adopting a couplesensitive approach in which relational and interactional aspects are emphasised.

Abstract [sv]

Vi lever längre än vad vi tidigare gjort, med den effekten att vi också lever längre med sjukdomar som demens. De flesta av de som diagnostiserats med demens bor länge i ordinärt boende och är ofta beroende av sitt sociala nätverk av främst makar eller barn till stöd. Det finns begränsad forskning om hur familjer och par utan formellt stöd hanterar tillvaron, och socialarbetare har ofta generell snarare än specifik kunskap och färdigheter i bemötande av äldre som lever med demens.

Syftet med denna avhandling är att undersöka hur par hanterar demensrelaterade utmaningar, såväl som om och hur dessa relaterar till aspekter av deras vi-skap. För att uppnå detta mål har det specificerats i forskningsfrågor beträffande parens kommunikativa hantering av situationer med demensrelaterade utmaningar, såväl som strategier för att närma sig känsliga ämnen som är kopplade till demens. En ytterligare fråga gäller hur paren relaterar till och använder sig av sitt vi-skap när de hanterar demens. Genom att utgå ifrån multimodal samtalsanalytisk teori och metodik har sekvenser från 15 videoinspelade intervjuer med par där en av partnern har en demensdiagnos studerats.  I artiklarna demonstreras hur partners hanterade demens gemensamt, och hur deras gemensamma grund som ett par var en viktig resurs för att berätta och minnas. När partners utan demens närmade sig känsliga ämnen med anknytning till demens använde de sig av strategier som mildrande prat eller beröring av partnern med demens under berättandet. Partners utan demens närmade sig frågan om framtiden på ett sätt som indikerar känslighet, medan partners med demens var mer direkta i sitt tal om framtiden. En sista konklusion är att partners utan demens använde sig av strategier såsom ledtrådar för att möjliggöra berättande och att minnas för personen med demens, något som sällan hade framgångsrika följder vad det gäller att minnas och kunde till och med få ansiktshotande effekter. Resultaten diskuteras vidare vad gäller implikationer för sociala arbetets utbildning, praktik och teori. Här argumenteras för betydelsen av ett nytt tillvägagångssätt som synliggör parperspektivet, inom vilket relationella och interaktionella aspekter betonas.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2018. p. 137
Linköping Studies in Arts and Sciences, ISSN 0282-9800 ; 736
conversation analysis, couplehood, dementia, epistemics, multimodal interaction, pronouns, relationships, video-recorded interviews, we-ness, “couplehood”, demens, kunskapshantering, multimodal interaktion, pronomen, relationer, samtalsanalys, videoinspelade intervjuer, vi-skap
National Category
Social Work
urn:nbn:se:liu:diva-147609 (URN)10.3384/diss.diva-147609 (DOI)9789176853221 (ISBN)
Public defence
2018-06-01, K1, Kåkenhus, Campus Norrköping, Norrköping, 10:15 (English)
Available from: 2018-04-27 Created: 2018-04-27 Last updated: 2018-05-15Bibliographically approved
Nilsson, E., Ekström, A. & Majlesi, A. R. (2018). Speaking for and about a spouse with dementia: A matter of inclusion or exclusion?. Discourse Studies, 20(6), 770-791
Open this publication in new window or tab >>Speaking for and about a spouse with dementia: A matter of inclusion or exclusion?
2018 (English)In: Discourse Studies, ISSN 1461-4456, E-ISSN 1461-7080, Vol. 20, no 6, p. 770-791Article in journal (Refereed) Published
Abstract [en]

This study analyses sequences where people with dementia are positioned as third parties in stories about their own lives. Previous research emphasises how people with dementia are frequently excluded from social encounters, and how others tend to speak for or about them in their co-presence. Drawing on conversation analytic methods when analysing 15 video recorded interviews with Swedish couples living with dementia, we argue that telling stories in which a spouse with dementia is positioned as a third party in his or her co-presence does not have to be an activity of exclusion. Rather, among couples, third-party positioning is a multifaceted activity where couples employ different practices to organise participation frameworks and manage both inclusion and exclusion in talk-in-interaction. Furthermore, we show how participants display joint speakership and counteract actions of exclusion by making use of various communicative resources such as gaze, touch and bodily orientation.

Place, publisher, year, edition, pages
Sage Publications, 2018
Conversation analysis, couples, dementia, inclusion, multimodal analysis, pronouns, we-ness
National Category
Other Social Sciences not elsewhere specified
urn:nbn:se:liu:diva-147757 (URN)10.1177/1461445618770482 (DOI)000446683900004 ()

Funding agencies: Bank of Sweden Tercentenary Foundation as part of the programme Dementia: Agency, Personhood and Everyday life [M10-0187:1]

Available from: 2018-05-11 Created: 2018-05-11 Last updated: 2018-10-30Bibliographically approved
Nilsson, E. & Olaison, A. (2017). What is yet to come?: Couples living with dementia orienting themselves towards an uncertain future. Qualitative Social Work
Open this publication in new window or tab >>What is yet to come?: Couples living with dementia orienting themselves towards an uncertain future
2017 (English)In: Qualitative Social Work, ISSN 1473-3250, E-ISSN 1741-3117Article in journal (Refereed) Epub ahead of print
Abstract [en]

Dementia is a chronic illness that not only has substantial effects on the life as well as future for the individuals diagnosed, but also affects those with whom these individuals have relationships. This has implications that need to be addressed by professional practice, not least since social work research has shown that the support available for couples managing dementia is insufficient. There are few studies today of how couples jointly talk about their future with dementia and how they adapt to it as a couple and as individuals. Therefore, this article explores how couples in which one of the spouses has a diagnosis of dementia jointly talk about an uncertain future with dementia. The study benefits from using the conversation analytic method when studying video-recorded interactions among 15 couples living with dementia. The results show that either or both spouses can actively request knowledge about the progression of dementia, but at the same time, the spouses without dementia express awareness of the uncertainty that is connected to a future with dementia. Moreover, either or both spouses may also express contentment with “not knowing.” In all examples, one or several of the participants alternate between taking epistemic stances of knowing and unknowing as well as ascribing stances to others, and spouses can display similar or oppositional stances. The findings suggest a need for developing communicative practice for couples to jointly talk about dementia, as well as a need for social workers to find ways of providing emotional support.

Place, publisher, year, edition, pages
Sage Publications, 2017
Conversation analysis, couplehood, dementia, future, social work practice
National Category
Other Social Sciences
urn:nbn:se:liu:diva-145719 (URN)10.1177/1473325017743104 (DOI)
Available from: 2018-03-19 Created: 2018-03-19 Last updated: 2018-04-27Bibliographically approved
Nilsson, E. & Hellström, I. (2016). Demens och identitet i relationer (1ed.). In: Ingrid Hellström, Lars-Christer Hydén (Ed.), Att leva med demens: (pp. 71-77). Malmö: Gleerups Utbildning AB
Open this publication in new window or tab >>Demens och identitet i relationer
2016 (Swedish)In: Att leva med demens / [ed] Ingrid Hellström, Lars-Christer Hydén, Malmö: Gleerups Utbildning AB, 2016, 1, p. 71-77Chapter in book (Other academic)
Place, publisher, year, edition, pages
Malmö: Gleerups Utbildning AB, 2016 Edition: 1
Demenssjuka, Demens
National Category
Humanities Sociology (excluding Social Work, Social Psychology and Social Anthropology)
urn:nbn:se:liu:diva-126087 (URN)978-91-4069-165-1 (ISBN)
Available from: 2016-03-14 Created: 2016-03-14 Last updated: 2016-04-04Bibliographically approved
Hydén, L.-C. & Nilsson, E. (2015). Couples with dementia: Positioning the ‘we’ . Dementia, 14(6), 716-733
Open this publication in new window or tab >>Couples with dementia: Positioning the ‘we’
2015 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 14, no 6, p. 716-733Article in journal (Refereed) Published
Abstract [en]

The aim of this article is to investigate how spouses in couples with dementia position themselves in relation to each other by analysing their use of pronouns, especially the we. The study uses joint interviews with 11 couples. Based on a quantitative analysis of pronoun use, it is argued that the pronoun we is used by all the spouses; however, it is used less frequently by the spouses with dementia in comparison with healthy spouses. A qualitative analysis of the use of the pronoun we shows that the spouses position, experience and consider themselves as a couple and that they position and experience themselves as individuals in relation to the couple. One of the challenges for couples with dementia is to be able to retain a we in face of the progression of the dementia disease. By positioning themselves in various ways, the spouses establish and negotiate quite a complex and emotionally charged web of relationships. 

Place, publisher, year, edition, pages
Sage Publications, 2015
Dementia, couple, couplehood, we-ness, positioning, pronoun
National Category
Applied Psychology
urn:nbn:se:liu:diva-107355 (URN)10.1177/1471301213506923 (DOI)000364640800002 ()
Riksbankens Jubileumsfond, M10-0187:1

Funding agencies: bank of Sweden Tercentenary Foundation, programme Dementia: agency, personhood and everyday life [M10-0187:1]

Available from: 2014-06-11 Created: 2014-06-11 Last updated: 2018-04-27Bibliographically approved

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