Abstract
ABSTRACTThe spouses of people suffering from dementia are commonly first-in-line caregivers. This can have a considerable effect on their own lives, health and marriages. Several studies have focused on spouses’ experiences, but very few have focused in any depth on their descriptions of themselves as subjects. Therefore, the aim of this study is to describe how spouse caregivers can express themselves when living with and caring for their partners with dementia. The study has a qualitative approach with a discourse analysis design and uses analytical tools such as rhetoric, subject positions and categorization. The results reveal three subject positions: as an actor, as a parent and as a survivor. The results show that as spouses struggle with external and internal clashes as subjects, they therefore need to develop coping strategies. They also experience pronounced loneliness and a risk to their own health. There is thus a need to support these spouses as individuals in their differing and changing needs.
Highlights
It is estimated that 46.8 billion people live with dementia and that this number is growing rapidly due to an increasingly older population
Living with and caring for a partner who has been diagnosed as having dementia required the spouse to enter a whole new world and perform new roles that were difficult to imagine, rehearse or prepare for
The spouses developed some of the skills that were necessary to manage daily life with a partner suffering from dementia
Summary
It is estimated that 46.8 billion people live with dementia and that this number is growing rapidly due to an increasingly older population. Dementia does affect the person with the condition, and the quality of life of family members (Ask et al, 2014; Eloniemi-Sulkava et al, 2002; Johannessen, Helvik, Engedal, & Thorsen, 2017). When those with dementia live at home, spouses are often the first-in-line caregivers. In their study, Merrick, Camic, and OShaughnessy (2016) found that both the person with dementia and the spouse are motivated to maintain their “couplehood” relationship (as described by Hellstrom, Nolan, & Lundh, 2005) and the dementia patient’s personhood
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