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Ethical and methodological issues in interviewing persons with dementia
Ersta Sköndal University College, Stockholm, Sweden.
University of Sheffield, UK .
Linköping University, Department of Medical and Health Sciences, Health and Society. Linköping University, Faculty of Arts and Sciences.
Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Health Sciences.
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 participants in research, with ethical difficulties often being cited as the reason for this. A wider inclusion of people with dementia in research raises several ethical and methodological challenges. This article adds to the emerging debate by reflecting on the ethical and methodological issues raised during an interview study involving people with dementia and their spouses. The study sought to explore the impact of living with dementia. We argue that there is support for the inclusion of people with dementia in research and that the benefits of participation usually far outweigh the risks, particularly when a ;safe context' has been created. The role of gatekeepers as potentially responsible for excluding people with dementia needs further consideration, with particular reference to the appropriateness of viewing consent as a primarily cognitive, universalistic and exclusionary event as opposed to a more particularistic, inclusive and context relevant process.

Place, publisher, year, edition, pages
Sage Publications, 2007. Vol. 14, no 5, 608-619 p.
Keyword [en]
dementia, ethical considerations, informed consent
National Category
Medical Ethics Nursing
URN: urn:nbn:se:liu:diva-13348DOI: 10.1177/0969733007080206PubMedID: 17901172OAI: diva2:20401
Available from: 2005-09-02 Created: 2005-09-02 Last updated: 2013-04-24
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
Linköping University Medical Dissertations, ISSN 0345-0082 ; 895
dementia, spousal relationship, couplehood, grounded theory
National Category
urn:nbn:se:liu:diva-3518 (URN)91-85299-04-9 (ISBN)
Public defence
2005-05-20, , Kåkenhus, Campus Norrköping, Norrköping, 09:00 (English)
Available from: 2005-09-02 Created: 2005-09-02 Last updated: 2009-02-25

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