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Awareness context theory and the dynamics of dementia: Improving understanding using emergent fit
Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Health Sciences.
University of Sheffield, UK.
Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Health Sciences.
2005 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 4, no 2, 269-295 p.Article in journal (Refereed) Published
Abstract [en]

This article presents the initial results of an ongoing constructivistgrounded theory study (Charmaz, 2000) exploringthe impact of dementia on the everyday life and relationships of older spousal couples. Using a processof ‘emergent fit’ (Glaser, 1978)and drawing upon data from 74 interviews with 20 spouse couples living with dementia, it considers the relevanceof ‘awareness context theory’ (Glaser& Strauss, 1965) and the ‘dynamicsof dementia’ (Keady, 1999) to an understanding of interpersonal relationships among spouses. The combinationof existing literature and new data providefurther insights into how couples actively work to ‘construct’ awareness in a way that, forthe majority, maintains both a sense of ‘self’for the person with dementia (PWD) and the integrityof the relationship between couples. It is suggested that a‘mutual acknowledgement’ of thediagnosis and a subsequent focus on maintaininga meaningful life in the present combine to create a ‘nurturative relational context’ in whichliving with dementia unfolds.

Place, publisher, year, edition, pages
2005. Vol. 4, no 2, 269-295 p.
Keyword [en]
awareness contexts, dynamics of dementia, grounded theory, spousal relationships
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-13345DOI: 10.1177/1471301205051096OAI: oai:DiVA.org:liu-13345DiVA: diva2:20398
Available from: 2005-09-02 Created: 2005-09-02 Last updated: 2017-12-13Bibliographically approved
In thesis
1. Parrelationer i förändring vid demenssjukdom: en studie med konstruktivistisk grundad teori
Open this publication in new window or tab >>Parrelationer i förändring vid demenssjukdom: en studie med konstruktivistisk grundad teori
2005 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aim of this thesis is to gain a better understanding how people with dementia and their spouses experience dementia over time, especially the impact it has on their inter-personal relationships and patterns of everyday life. Data were collected using separate semi-structured interviews with 20 persons with dementia and their spouses of 6 monthly intervals over an 18-months period (132 interviews in total), and analysed using constructivist grounded theory.

Analysis suggested that whilst spouses are aware of and acknowledge the diagnosis of dementia, they do not routinely talk about it but rather the focus of their combined efforts is on making life as meaningful as possible. To do this couples, rather than individuals, actively ‘work together’ to create a ‘nurturative relational context’ in order to sustain the quality of their relationship, and maintain the self-image and sense of agency of the person with dementia.

In order to create a ‘nurturative relational context’ couples continued to ‘do things together’ for as long as possible by understanding complementary roles underpinned by a mutual appreciation of each others contribution in a way that builds upon the remaining strengths of the person with dementia. Their focus is therefore on ‘couplehood’ as much as ‘personhood’.

An analysis of the complete data set identified three temporally sequenced but overlapping phases of the experience of couplehood termed ‘sustaining couplehood’, ‘maintaining involvement’, and ‘becoming alone’. ‘Sustaining couplehood’ had the primary goal of ensuring that the spuses’ ‘work’. This involved four interrelated sets of activities: talking things through, in order to ensure good communication and acknowledge and value differences; being affectionate and appreciative by demonstrating continued attractiveness to their spouse; making the most of things by enjoying everyday pleasures, looking for positive interpretations of events and focussing on the present (living for today); and finally, keeping the peace by being aware of potential points of friction and not responding to difficult behaviour. Both the person with dementia and the non-affected spouse were active strategies in the above process.

In addition both spouses worked to ‘maintain the involvement’ of the person with dementia by ensuring that they had an active role to play. However, despite their efforts, eventually the non-affected spouse took on an increasing role and this occurred in a number of ways, either by the person with dementia consciously ‘handing over’ responsibility or more passively ‘letting go’, or by the non-affected spouse ‘taking over’.

‘Sustaining couplehood’ and ‘maintaining involvement’ often occurred simultaneously but the relative emphasis changed over time as ‘sustaining couplehood’ became more difficult and increasing effort was expended in ‘maintaining involvement’. As this occurred the data suggested that the non-affected spouse became increasingly ‘alone’ as the dementia progressed. This process has yet to be fully explored, however, it is clear that for spouses a complete understanding of the dementia experience is not possible without consideration of ‘couplehood’.

Place, publisher, year, edition, pages
Institutionen för vård och välfärd, 2005
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 895
Keyword
dementia, spousal relationship, couplehood, grounded theory
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-3518 (URN)91-85299-04-9 (ISBN)
Public defence
2005-05-20, , Kåkenhus, Campus Norrköping, Norrköping, 09:00 (English)
Opponent
Supervisors
Available from: 2005-09-02 Created: 2005-09-02 Last updated: 2009-02-25

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Hellström, IngridUlla, Lundh

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