Coherence of illness representations in early-stage dementia: an exploratory study using the framework of Leventhal’s common sense self-regulation model

The Common Sense Model of Self-Regulation of Health and Illness has previously been applied to people with early-stage dementia. This suggests that people hold ‘illness representations’ of cognitive perceptions of their health condition. Illness representations develop from lay knowledge, current experience and information from external sources. Recent studies have highlighted that people with early-stage dementia have unmet information needs and require individually tailored information about aspects of dementia which are important to them. Professionals require a way to identify what people with early-stage dementia feel they do not understand about their dementia. Thus, the current study investigated whether illness representations might provide a mechanism for identifying the information needs of eight people with early-stage Alzheimer’s or mixed dementia attending a National Health Service memory clinic.
An important feature of illness representations is whether they allow someone to form a coherent understanding of their condition, the ‘coherence’ of their illness representation. For the current study, the definition of coherence was adapted to match research aims, allowing the investigation of particular aspects of dementia people felt they did not understand using semi-structured interviews. A novel feature of this approach was using explicit prompts about what participants felt they understood or did not understand about each area of their illness representation to help illustrate how lack of understanding could contribute to absence of coherence. Interview transcripts were subject to framework analysis which showed that participants could identify things which they did not understand about their dementia and aspects of dementia they would like to know more about. Broad areas of dementia were identified which several people wanted to know about, along with idiosyncratic information needs. For some participants, illness representations, informed by medical stereotypes, appeared to limit their awareness of possible psychosocial support. Strengths, limitations and recommendations for research and practice were discussed.