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Carers' narratives: Finding dementia with Lewy bodies experiences


  • The author has reported no conflicts of interest.

Ms Kathryn A Nicholson, Centre for Program Evaluation, Faculty of Education, The University of Melbourne. Email:


Carers' narratives provide a unique insight into the caring experience. From a human interest perspective they have appeal to the general population; however, they also target and are read by niche audiences – families striving to understand the challenges of the caring role. This article examines four carer narratives and their relevance to particular niche audiences; three classified from the information provided on their book covers as pertaining to Alzheimer's disease and one to Parkinson's disease. It explores the impact of care on the caregivers and reviews the promoted diagnoses in light of the current understanding of dementia with Lewy bodies. The author argues that the information provided in the titles, in good faith, may not reflect the content of the narratives and that three of these narratives may provide carers of people who have dementia with Lewy bodies with insights into the challenges that this disease presents.