The thesis consists of four articles, three of which are described in brief below.
Couples with dementia: Positioning the ‘we’
The purpose of this article was to study how spouses who form a couple living with dementia position themselves in relation to each other, and this was done by analysing how they make use of pronouns, above all ‘we’.
A quantitative analysis shows that all spouses position themselves at times as ‘we’, but this pronoun is used to a lesser extent by the spouses who have dementia than by those who do not.
A qualitative analysis shows that the spouses position, experience and identify themselves as ‘we’, but that they also position themselves at times as ‘I’ in relation to a stable ‘we’.
One of the challenges of living with dementia is coping with the process of change in the couple relationship and by positioning oneself in different ways during this process to allow for negotiation and the establishment of different types of relationship and identification.
Article 1: Hydén, L-C., & Nilsson, E. (2015). Couples with dementia: Positioning the ‘we’. Dementia, 14 (6), 716-733.
Fishing for answers:Couples living with dementia managing trouble with recollection.
This article studies situations that arise when a partner with dementia is expected to be able to recollect information that relates to the couple's shared life and the basis for their couple relationship, but does not succeed in doing so.
The article is based on conversation analysis, which means that both verbal and non-verbal interaction between the spouses are studied in detail on the basis of videotaped conversations in order to obtain knowledge about the strategies couples may have for coping with a common but potentially sensitive situation arising in connection with dementia; namely, remembering something that the person with dementia is expected to be able to do.
The result shows that the spouses who do not have dementia often use clues in order to help the person with dementia to remember, a strategy that unfortunately has little success with regard to recall and can affect the well-being of the person with dementia. This result is discussed on the basis of aspects of change linked to the spouses' common ground.
Article 2: Nilsson, E. (2016). Fishing for answers: Couples living with dementia managing trouble with recollection. Educational Gerontology. DOI: 10.1080/03601277.2016.1260911
Speaking for and about a spouse with dementia: Inclusion through co-construction and embodiment.
This article makes use of conversation analysis to study situations in which the partner who does not have dementia speaks about his or her partner with dementia in the third person, even though the partner is present. Talking about someone in their presence can be a sensitive matter and is often associated with asymmetrical relationships, as is the case with institutional conversations or parent-child conversations. This is also a common situation faced by many families and couples coping with dementia.
Having studied all the episodes where the partners who do not have dementia talk in the third person about their partners who do, in relation to their negative experiences of living with dementia, we identified two themes: Consent and joint-storytelling and Inclusive storytelling.
The first theme shows how the spouses with dementia make an active contribution to the storytelling but hand overall responsibility to the partner who do not have dementia.
The second theme shows how the story-telling is done by the partner who does not have dementia and tries to include the partner with dementia in the conversation. The spouses make frequent use of non-verbal resources such as glances and touch in these situations, resources which may be of help in modifying their positioning and in smoothing over any sensitivities connected to this.
Article 3: Nilsson, E., Majlesi, A-R., & Ekström, A. (in progress): Speaking for and about a spouse with dementia: Inclusion through co-construction and embodiment.