A qualitative study of the way in which male carers of spouses with a working age dementia experience and perceive their role.

Purpose: The number of people with dementia in the UK is known to be increasing. A minority of this group will develop a working age dementia where onset will be prior to 65 years of age. It is suggested that many people with a dementia will be cared for on an informal basis by family or friends. This informal caring role has been shown to be psychologically and physically harmful. If people are to continue to offer the current level of input it is essential that their needs are understood and that they receive the appropriate support from services. Method: A systematic literature search was carried out to determine what was known about caring for those with a dementia. Whilst there was some reference to gender differences in terms of coping styles little of the research had looked at how male carers needs might differ from female carers. To address this gap in the knowledge base a qualitative study was carried out using interpretive phenomenological analysis. The aim of the study was to explore how seven men whose wives developed a working age dementia experienced and perceived their caring role. Results: Five themes emerged from the data: facing up to dementia, challenges to male gander stereotypes, issues of control, using psychological defences and loss. The most significant of these in terms of coping seemed to be perceived control. Whilst the one which appeared to have the most direct impact on the participants was that of loss and the grief process that this brought about. Many of the research findings mapped onto the model of caregiver stress developed by Pearlin et al. (1990) Conclusion: This study helped to expand the current level of understanding about the specific needs of male carers whose wives developed a working age dementia. Furthermore, it highlighted the importance of perceived control over the way in which these men experienced their carer role.