Wadham, Olivia and Murray, Craig and Rust, Jonathan and Simpson, Jane (2014) Understanding shared experiences of couples and families in which one person has dementia. PhD thesis, Lancaster University.
Abstract
This thesis explored the co-constructed experiences of couples and families in which one person had a diagnosis of dementia. It includes a literature review, a research paper, a critical appraisal and an ethics section. The literature review is a meta-synthesis of 10 qualitative studies which explored the impact living with dementia can have on the couple relationship, or the impact the couple relationship has on dementia. The synthesis resulted in four interrelated themes: (1) togetherness – continuing as ‘we’ are; (2) upsetting and re-defining the balance – a new ‘normal’ is evolving; (3) sensitive attunement – shielding one’s partner from the effects of dementia; and (4) resilience – distancing distress and cherishing the present moment. These themes highlighted couples’ shared efforts to maintain aspects of their relationship in the context of dementia. Findings have important implications for services to support couples’ efforts to enhance their sense of couplehood. The research paper extended these findings to explore shared experiences of family units in which one person has dementia. Semi-structured interviews with seven families were analysed using interpretative phenomenological analysis. This resulted in five themes (1) conflicting identities: person or ‘dementia patient’; (2) loneliness and isolation: finding ways to maintain belonging and connection; (3) family support: protecting and enabling; (4) feeling trapped: shifting power and control; and (5) fear and uncertainty: making sense and reigniting hope. Findings have implications for services to consider the whole family system, encouraging connection and belonging to enhance the natural therapeutic capacity of families. Finally, the critical appraisal includes reflections of a number of ethical, methodological and conceptual issues that became pertinent when conducting this research.