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Making sense of dementia: A phenomenographic study of the information behaviours of people diagnosed with dementia

Juliet Harland (Information School, University of Sheffield, Sheffield, UK)
Peter A. Bath (Information School, University of Sheffield, Sheffield, UK)
Ann Wainwright (Sheffield Health and Social Care NHS Foundation Trust, Sheffield, UK)
Jeremy Seymour (Rotherham NHS Foundation Trust, Rotherham, UK)

Aslib Journal of Information Management

ISSN: 2050-3806

Article publication date: 15 May 2017




The purpose of this paper is to investigate the information behaviours of patients newly diagnosed with dementia.


This is a cross-sectional qualitative study, using in-depth interviews with 13 people recently diagnosed with dementia.


Reactions to a diagnosis of dementia varied and these influenced the perception of the value of information when making sense of the diagnosis. Information was avoided if participants did not feel that they could influence their situation; instead, participants relied on internal explanations to normalise their memory loss. Barriers to information seeking and use included not knowing who to speak to, perceived stigma associated with dementia and difficulty of applying generic information to own situation. Some participants valued information that confirmed their suspicions and provided explanations.

Research limitations/implications

This study was based on a small sample size (n=13), the findings may not be generalisable to all people with dementia; however, the findings may be transferable to people who have recently been diagnosed with dementia.

Practical implications

There is not a one-size-fits-all approach to information provision for people with dementia at diagnosis, information should be tailored to individuals.

Social implications

There is a need to address the feeling of powerlessness and futility that some people with dementia experience at diagnosis, as this precludes independent information seeking and use. People receiving a diagnosis may need additional support and information pertinent to their specific circumstances, separate from the information needs of their carer(s).


The study provides a new understanding of the information behaviours of people recently diagnosed with dementia and how these differ from those of informal carers.



The authors would like to thank the Arts and Humanities Research Council, who funded the study. The authors also thank the participants who kindly agreed to take part in the research and also thank the three anonymous reviewers whose helpful comments helped the authors to improve the paper.


Harland, J., Bath, P.A., Wainwright, A. and Seymour, J. (2017), "Making sense of dementia: A phenomenographic study of the information behaviours of people diagnosed with dementia", Aslib Journal of Information Management, Vol. 69 No. 3, pp. 261-277.



Emerald Publishing Limited

Copyright © 2017, Emerald Publishing Limited

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