Making sense of dementia and adjusting to loss: Psychological reactions to a diagnosis of dementia in couples

Abstract

The current emphasis on early detection and disclosure of a diagnosis of dementia highlights the need to examine couples’ shared constructions of, and responses to, the diagnosis, and to explore the appraisals that couples make about the illness at an early stage. While the experiences of carers and of people with dementia have mostly been considered separately, further investigation of the shared experience of couples where one partner is developing dementia is required. This study adopted a family systems perspective to investigate psychological reactions to a diagnosis of dementia in nine couples where one partner had received a diagnosis of either Alzheimer's disease or vascular dementia, with particular emphasis on the possible relevance of psychological responses to loss. Interpretative phenomenological analysis was used to explore participants’ experiences of receiving a diagnosis of dementia, which were compared and contrasted across couples. Ten themes were subsumed under two higher-order themes, ‘Not quite the same person, tell me what actually is wrong’ and ‘Everything's changed, we have to go from there’, and linked through the overarching theme of ‘Making sense and adjusting to loss’. A model is presented that encapsulates the oscillating processes couples appeared to go through in making sense of the experience of early-stage dementia and adjusting to the losses and difficulties evoked by the illness, which appeared to be similar to the process of adjustment outlined in dual-process models of grief. The findings suggest that couples who receive a diagnosis of dementia may be supported by helping them to create a joint construction that enables them to make sense of their situation, find ways of adjusting to the changes experienced in their roles and identity, and manage the losses they face in the early stages of dementia.