Illness Representations and Adjustment to Dementia

Abstract

Abstract Literature review: Studies examining the attitudes, experiences and impact of a dementia diagnosis for people with dementia and their carers were reviewed. The review revealed that there are often delays in people contacting physicians when dementia-related signs are noticed and people with dementia and their carers cite reasons for and against seeking diagnostic disclosure. There is mixed evidence regarding whether those who receive a diagnosis and their carers are satisfied with the diagnostic process and the information provided by clinicians. Initial reactions to the diagnosis include shock and distress, or relief and validation, although emotions alter over time as a process of adjustment takes place. There are a number of methodological limitations to the quantitative and qualitative studies in this review. Conceptual and clinical implications are discussed and recommendations are made for future research. Research Report: The present study assessed the relationship between the Common Sense Model of illness representations (Leventhal et al., 1980) and psychological adjustment in a cross-sectional sample of 49 people diagnosed with dementia. Those who held representations of severe consequences, a strong illness identity and negative emotional representations experienced greater psychological distress. Representations of control, identity, cause and emotional representations were also related to specific coping behaviours. The ‘avoidance or restriction of activities’ as a coping behaviour, was associated with both emotional representations and psychological distress, but did not mediate the relationship between the two. These findings are discussed in relation to the Common Sense Model, previous research and clinical practice.