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Exploring 'couplehood' in dementia: a constructivist grounded theory study
Linköpings universitet, Institutionen för samhälls- och välfärdsstudier ; Linköpings universitet, Hälsouniversitetet.
2005 (English)Doctoral thesis, comprehensive summary (Other academic)Alternative title
Parrelationer i förändring vid demenssjukdom : en studie med konstruktivistisk grundad teori (Swedish)
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
Linköping: Linköpings universitet , 2005. , 49 p.
Series
Linköping University medical dissertations, ISSN 0345-0082 ; 895
Keyword [en]
dementia, spousal relationship, couplehood, grounded theory
National Category
Nursing
Identifiers
URN: urn:nbn:se:esh:diva-887ISBN: 91-85299-04-9 (print)OAI: oai:DiVA.org:esh-887DiVA: diva2:376457
Public defence
2005-05-20, Kåkenhus, Campus Norrköping, Norrköping, 09:00 (English)
Opponent
Supervisors
Projects
Hemmet som den sista vårdplatsen
Available from: 2010-12-10 Created: 2010-12-10 Last updated: 2017-01-17Bibliographically approved
List of papers
1. Sustaining 'couplehood': spouses' strategies for living positively with dementia
Open this publication in new window or tab >>Sustaining 'couplehood': spouses' strategies for living positively with dementia
2007 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 6, no 3, 383-409 p.Article in journal (Refereed) Published
Abstract [en]

This article explores the strategies that spouses use in orderto live positively when one partner has dementia. Data werecollected from 152 interviews with 20 couples conducted overa period of five years. Using a constructivist grounded theorymethodology, data were analysed to capture the main processesinvolved and charted how these changed over time. Three mainphases were identified termed: `sustaining couplehood'; `maintaininginvolvement'; and `moving on', that operated in an iterativerather than linear fashion. The data highlight the very activerole played by both partners, especially in the early stagesof the disease, as they strive to maintain the quality and closenessof their relationship by creating what we term a `nurturativerelational context'. The diverse strategies that the couplesadopt are presented, and the gradual way in which the personwith dementia `hands over' or `let's go' of responsibility totheir partner is described. The article provides several newinsights into the nature of spousal relationships in dementiaand the ways in which they seek to maximize their quality oflife, and, wherever possible, sustain couplehood.

Keyword
couplehood, dementia, grounded theory, spousal relationships
National Category
Nursing Other Social Sciences not elsewhere specified
Identifiers
urn:nbn:se:esh:diva-438 (URN)10.1177/1471301207081571 (DOI)
Projects
Hemmet som den sista vårdplatsen
Available from: 2010-07-02 Created: 2010-07-02 Last updated: 2017-01-17Bibliographically approved
2. We do things together: A case study of couplehood
Open this publication in new window or tab >>We do things together: A case study of couplehood
2005 (English)In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, Vol. 4, no 1, 7-22 p.Article in journal (Refereed) Published
Abstract [en]

The value of the single case study is well established in dementiacare with the seminal contributions of Alzheimerand Kitwood being based on the study of individuals.This article presents a case study of an elderly married coupleliving with dementia and explores how theirrelationship has continued to flourish. In drawingon their story we highlight ways in which both partners seekto ‘maintain involvement’ of theperson with dementia (PWD) (Keady, 1999), andconsider the various types of ‘work’ that is required. We suggest that whilst the ‘personhood’of the PWD as an individual has received muchrecent attention, a consideration of ‘couplehood’is also essential to a full understanding of how spouses live with and respond to the impact of dementia.

Keyword
couplehood, dementia, maintaining involvement
National Category
Nursing Other Social Sciences not elsewhere specified
Identifiers
urn:nbn:se:esh:diva-884 (URN)10.1177/1471301205049188 (DOI)
Projects
Hemmet som den sista vårdplatsen
Available from: 2010-12-10 Created: 2010-12-10 Last updated: 2017-01-17Bibliographically approved
3. Awareness context theory and the dynamics of dementia: Improving understanding using emergent fit
Open this publication in new window or tab >>Awareness context theory and the dynamics of dementia: Improving understanding using emergent fit
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.

Keyword
awareness contexts, dynamics of dementia, grounded theory, spousal relationships
National Category
Nursing Other Social Sciences not elsewhere specified
Identifiers
urn:nbn:se:esh:diva-883 (URN)10.1177/1471301205051096 (DOI)
Projects
Hemmet som den sista vårdplatsen
Available from: 2010-12-10 Created: 2010-12-10 Last updated: 2017-01-17Bibliographically approved
4. Ethical and methodological issues in interviewing persons with dementia
Open this publication in new window or tab >>Ethical and methodological issues in interviewing persons with dementia
2007 (English)In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 14, no 5, 608-619 p.Article in journal (Refereed) Published
Abstract [en]

People with dementia have previously not been active participantsin research, with ethical difficulties often being cited asthe reason for this. A wider inclusion of people with dementiain research raises several ethical and methodological challenges.This article adds to the emerging debate by reflecting on theethical and methodological issues raised during an interviewstudy involving people with dementia and their spouses. Thestudy sought to explore the impact of living with dementia.We argue that there is support for the inclusion of people withdementia in research and that the benefits of participationusually far outweigh the risks, particularly when a `safe context'has been created. The role of gatekeepers as potentially responsiblefor excluding people with dementia needs further consideration,with particular reference to the appropriateness of viewingconsent as a primarily cognitive, universalistic and exclusionaryevent as opposed to a more particularistic, inclusive and contextrelevant process.

Keyword
dementia, ethical considerations, informed consent
National Category
Nursing
Identifiers
urn:nbn:se:esh:diva-886 (URN)10.1177/0969733007080206 (DOI)
Projects
Hemmet som den sista vårdplatsen
Available from: 2010-12-10 Created: 2010-12-10 Last updated: 2017-01-17Bibliographically approved

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