Robinson, Lucie; (2003) Making sense of dementia and adjusting to loss: Psychological reactions to a diagnosis of dementia in couples. Doctoral thesis (D.Clin.Psy), UCL (University College London).

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Abstract

The current emphasis on early detection and disclosure of a diagnosis of dementia means that it is possible to examine the shared understanding of the diagnosis of dementia in couples at an early stage of the disease. This study aimed to investigate psychological reactions to a diagnosis of dementia in couples where one partner had received a diagnosis of either Alzheimer's disease or vascular dementia. This was an exploratory study designed to build on research looking at the experience of dementia from the perspective of people with dementia and their partners. The study involved elaborating couples' shared construction and understanding of and responses to the diagnosis of dementia and the appraisals couples made about the illness. Several theoretical frameworks were used to inform and guide the research including systemic theory, and social constructionist and dialectical models of dementia. Nine couples were interviewed using a semi-structured interview schedule. The data was transcribed and then analysed using qualitative methods. Firstly, interpretative phenomenological analysis was used to explore participants' experiences of receiving a diagnosis of dementia, which were compared and contrasted across couples. The ten themes extracted from the qualitative data fell into two higher-order categories, "Not quite the same person, tell me what actually is wrong" and "Everything's changed, we have to go from there". The first category related to couples' attempts to make sense of what was happening to the person with dementia and how this process had been influenced by their experiences of receiving a diagnosis of dementia. The second category related to the losses and difficulties described by couples as well as the coping strategies they used to adjust to their situation. An overarching theme also emerged, "Making sense and adjusting to loss", which is presented in a model that encapsulates the 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. Secondly, this analysis was supplemented by a voice relational method that examined the 'voice' which was heard from each person and the types of conversation interactions between partners. The analysis revealed two categories of interaction style displayed by couples, which related to partners either "silencing" or "supporting and facilitating" their spouse with dementia to have a voice. The clinical and service implications of these results are discussed, and focus on how services can support couples who receive a diagnosis of dementia to create a joint construction to help them make sense of their situation, to find ways to adjust to the changes experienced in their roles and identity, and to manage the losses they face in the early stages of dementia.

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