Abstract/Summary

Little attention has been paid by publishers of accessible texts to the needs of readers who have early-stage Alzheimer’s disease but who want to continue to read for pleasure. The aim of this thesis is to explore the effect on reading of the specific memory impairment that is characteristic of this form of dementia and to investigate whether there are modifications to text design or content that would be beneficial. A qualitative approach involving iterative testing was taken to the research. An initial scoping study established the nature of the condition and assessed the feasibility of volunteer recruitment. Collaboration with established organisations was chosen to ensure consistency of participant diagnosis and adherence to strict ethical guidelines. Three small-scale participant-centred studies were carried out involving both one-to-one interviews and group meetings. A reflexive approach ensured that the research findings were constantly reviewed. Sample materials were devised to simulate the experience of reading a printed book. Using a combination of published texts and improvised visual materials, the samples highlighted specific problems with content and presentation that had been identified in the published literature and by informants during the scoping study. With careful questioning by the researcher, participants were able to choose between contrasting memory-supporting features and to articulate their further needs. A favourable response was received to the addition of descriptive illustrations to works of fiction, providing plot summaries at the start of each new chapter, and printing a list of characters in the prelims or on a jacket flap. Visualisation skills were also reported by a number of informants as being unaffected by a cognitive impairment. The studies confirm the contribution made by multidisciplinary research to the field of dementia studies. Participant involvement in the research combined with medical knowledge and publishing heuristics produced an innovative approach to a multifaceted problem.