Making sense of dementia

Abstract

Article:Harland, J., Bath, P.A. orcid.org/0000-0002-6310-7396, Wainwright, A. et al. (1 more author) (2017) Making sense of dementia: a phenomenographic study of the information behaviours of people diagnosed with dementia. Aslib Journal of Information Management, 69 (3). pp. 261-277. ISSN 2050-3806 https://doi.org/10.1108/AJIM-08-2016-0141 eprints@whiterose.ac.uk https://eprints.whiterose.ac.uk/ Reuse Unless indicated otherwise, fulltext items are protected by copyright with all rights reserved. The copyright exception in section 29 of the Copyright, Designs and Patents Act 1988 allows the making of a single copy solely for the purpose of non-commercial research or private study within the limits of fair dealing. The publisher or other rights-holder may allow further reproduction and re-use of this version -refer to the White Rose Research Online record for this item. Where records identify the publisher as the copyright holder, users can verify any specific terms of use on the publisher's website. TakedownIf you consider content in White Rose Research Online to be in breach of UK law, please notify us by emailing eprints@whiterose.ac.uk including the URL of the record and the reason for the withdrawal request. Design/methodology/approach: Cross-sectional qualitative study, using indepth interviews. 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.

The Human Need for Equilibrium: Qualitative Study on the Ingenuity, Technical Competency, and Changing Strategies of People With Dementia Seeking Health Information

“…Although our research validates the importance of support groups (and provides evidence for their role in filling physiological, social, and emotional information needs), our findings refute this claim of disinterest. Our findings are more aligned with the recent Harland et al [10] study, which highlights the interests of some people with dementia to seek information 4 weeks after diagnosis, whereas others avoided it as they felt they could not affect their situation [10]. Similarly, we found that some individuals, such as Velma, practiced information avoidance for up to 6 months after diagnosis.…”

“…Similarly, we found that some individuals, such as Velma, practiced information avoidance for up to 6 months after diagnosis. Some participants' justification for information avoidance was because they felt emotionally "numb" (Velma) rather than powerless to affect their situation, as reported in the study by Harland et al [10], and even reported the decisions to engage in various information behaviors, including actively seeking dementia information later in their lives. Because of our semistructured interviews with 16 participants with dementia recruited through convenience sampling, we were able to discover the transitions that many participants underwent in their information behavior.…”

“…Therefore, researchers have studied the information behaviors of populations such as people with diabetes [3,4], breast cancer [5], and prostate cancer [6]. We studied the health information needs and behaviors of people with dementia as, similar to those with other health conditions, they want to be fully informed about their diagnosis [7][8][9][10]; however, the cognitive nature of their medical condition makes this inherently difficult. Therefore, we must identify the information that they seek, as well as find the most appropriate ways to provide it, to meet their needs.…”

“…Harland et al [10] found that perceptions of dementia were major factors affecting information-seeking behaviors immediately after diagnosis. For example, people with dementia avoided health information if they felt unable to influence their situation, whereas others valued and sought this information to "confirm their suspicions and provide explanations" [10].…”

“…Harland et al [10] found that perceptions of dementia were major factors affecting information-seeking behaviors immediately after diagnosis. For example, people with dementia avoided health information if they felt unable to influence their situation, whereas others valued and sought this information to "confirm their suspicions and provide explanations" [10]. Harland et al [10] called for further work to understand "how information needs and behaviors change over time and with the progression of the disease"-a call to which this paper responds.…”