Illness representations of dementia: a scoping review

As the number of persons with dementia grows, an increasing number of families, professionals, and laypersons will come into contact with persons with cognitive deterioration. Assessing dementia illness representations (IRs) among these groups may have great importance for understanding their responses to dementia. The purpose of this study was to summarize and critically review the literature on dementia IRs. A total of 25 articles that satisfied the inclusion criteria were identified. The review revealed that conceptually, research attention on dementia IRs has increased over the past several years as a result of changes in the notion of IRs and in the dementia discourse. Regardless of the population examined, dementia was mostly described as a chronic condition, presenting more cognitive than behavioral symptoms, and as being caused mainly by age, heredity, and abnormal brain changes. Methodologically, the area of dementia IRs is characterized by design, sample, and data collection weaknesses. Findings suggest that although the literature in the area of dementia and IRs is increasing, several conceptual and methodological limitations still have to be resolved in order to advance knowledge in the area. The research and clinical implications of these findings stress the importance of IRs in the area of dementia.