Making sense of dementia

Abstract

Purpose The purpose of this paper is to investigate the information behaviours of patients newly diagnosed with dementia. Design/methodology/approach This is a cross-sectional qualitative study, using in-depth interviews with 13 people recently diagnosed with dementia. Findings 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). Originality/value 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.