Emotional and systemic experiences of having a partner living with dementia

It is predicted that the number of people living with dementia worldwide will increase to 135.5 million by 2050 (World Health Organization, 2016). Moreover, the majority of people living with dementia are cared for within a community setting, primarily by their partner or family members. As a result of providing care individuals can experience a deterioration in their subjective psychological wellbeing, physical health and relationships. Consequently, the overall aim of this thesis was to explore the emotional and systemic experiences of having a partner with dementia. Specifically, a meta-synthesis was conducted to review the current understanding of the experiences of individuals whose partner is in long term care. The review synthesised the finding of thirteen qualitative studies using a meta-ethnographic approach (Noblit & Hare, 1988). As a result, four themes were identified which included; i) a continuation of social isolation; ii) challenges to planning for the future; iii) embracing the changing boundaries of marriage and iv) negotiating a new sense of self. Consequently the review highlighted the process of identity and role transition which individuals experience when their partner is living in long term care. Furthermore, a study was conducted to explore the experience of self-conscious emotions (e.g. shame, guilt and pride) in individuals living with their partners who have dementia. Specifically, semi-structured interviews were conducted with eight partners living in the community. Moreover, the interviews were transcribed and the data analysed using an interpretative phenomenological approach. As a result, three themes emerged; ‘guilt as a consequence of marriage beliefs and motivator of caring behaviour’, ‘discussing dementia elevates embarrassment but decreases guilt’ and ‘difficulty of feeling proud of caring within the traditional boundaries of marriage’. Consequently, the study acknowledged the impact of social expectations on individual’s experience of self-conscious emotions and subsequently their behaviour.