Illness representations in early-stage dementia: a preliminary investigation

The self-regulation model of adjustment to illness suggests that individual differences in coping and responding are related to the illness representations people hold. The present study explored the feasibility of applying this concept with people with early-stage dementia.

Understanding of the illness was explored in semi-structured interviews with 22 people who had a diagnosis of mild to moderate Alzheimer's disease or mixed dementia, and a measure of mood was administered. Interview transcripts were subjected to content analysis.

Representations covering illness identity, cause, course, cure/control and consequences were successfully elicited, but diverged from professional constructs in some important respects. Most participants regarded their difficulties as part of normal ageing, and one-third viewed their condition as stable or improving. Almost all participants described some positive coping strategies; participants who believed that nothing could be done to help were more likely to score above clinical cut-offs for depression or anxiety.

The findings offer a preliminary insight into the nature of illness representations in early-stage dementia, and support the relevance of the self-regulation model as a basis for understanding and intervention.