Exploring the process of adjustment to a diagnosis of dementia at working-age: a qualitative study

42,000 people are thought to be living with a diagnosis of working-age dementia (WAD) in the UK (Prince, 2014). For the person with dementia, the unexpectedness of receiving a diagnosis at this age (Roach, Drummond, & Keady, 2016), alongside other factors, may lead to additional difficulties to those diagnosed at an older-age. In addition, informal carers are thought to suffer significantly greater levels of stress than their older-age counterparts (Luscombe, Brodaty, & Freeth, 1998). There is a lack of qualitative information on adjustment to a diagnosis of dementia, and particularly on adjustment to dementia at working-age. It has been suggested that the process of adjustment in illness is ongoing for as long as the illness continues; it is vital that adjustment is understood in this way (Brennan, 2001), to ensure that services are not complacent or expect an end-point of change. To start to understand this for those affected by dementia, at all ages and stages, is crucial to developing psychological interventions that facilitate this process. This thesis aimed to explore the early adjustment process (including areas of agreement and difference) between people living with dementia and their cohabiting companions. In addition, it aimed to use this information to consider how services may help to facilitate adjustment. A qualitative, longitudinal, prospective design was employed to meet the aims of this research. Five working-age dementia dyads (person with dementia and cohabiting companion) were interviewed separately within three months of receiving a diagnosis, and again three months later. Thematic analysis was used to explore the adjustment process for individuals in this early stage. The identification of patterns across the data is important to start to understand the phenomenon being studied and thematic analysis allows deep and rich accounts of experience to be drawn out (Braun & Clarke, 2013); this was considered key for giving both members of the dyad a voice. From the analysis of the 20 semi-structured interviews completed, three overarching themes were constructed based on their frequency and salience: 1) 'connectedness', a relational theme describing a process of disconnecting and reconnecting with others, 2) 'negotiating roles', a theme describing the evolution of becoming a carer or caree, and the steps taken in an attempt to adapt to these new roles, and 3) 'forming narrative', a latent theme describing how participants oscillate between contemplating the past and the future, while intermittently surviving the present. Additional themes were found to frame the main process themes: 1) 'tolerating (or not) uncertainty', whereby participants discussed the varying levels of uncertainty that characterise a diagnosis of dementia, and how responses to this impact adjustment and 2) 'being of working-age', where participants described the nuances of a diagnosis of dementia at a younger age, and how this permeated the overall process. These findings support the idea of adjustment as a process, highlighting movement within and between themes. Similarities and differences between members of the dyad bring to light how interventions may support the adjustment process in the early stages