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Mining Social Media Data to Study the Consequences of Dementia Diagnosis on Caregivers and Relatives

Gkotsis, G; Mueller, C; Dobson, RJB; Hubbard, TJP; Dutta, R; (2020) Mining Social Media Data to Study the Consequences of Dementia Diagnosis on Caregivers and Relatives. Dementia and Geriatric Cognitive Disorders , 49 (3) pp. 295-302. 10.1159/000509123. Green open access

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Abstract

INTRODUCTION: Caregivers for people with dementia face a number of challenges such as changing family relationships, social isolation, or financial difficulties. Internet usage and social media are increasingly being recognised as resources to increase support and general public health. OBJECTIVE: Using automated analysis, the aim of this study was to explore (i) the age and sex of people who post to the social media forum Reddit about dementia diagnoses, (ii) the affected person and their diagnosis, (iii) which subreddits authors are posting to, (iv) the types of messages posted, and (v) the content of these posts. METHODS: We analysed Reddit posts concerning dementia diagnoses and used a previously developed text analysis pipeline to determine attributes of the posts and their authors. The posts were further examined through manual annotation of the diagnosis provided and the person affected. Lastly, we investigated the communities posters engage with and assessed the contents of the posts with an automated topic gathering/clustering technique. RESULTS: Five hundred and thirty-five Reddit posts were identified as relevant and further processed. The majority of posters in our dataset are females and predominantly close relatives, such as parents and grandparents, are mentioned. The communities frequented and topics gathered reflect not only the person's diagnosis but also potential outcomes, for example hardships experienced by the caregiver or the requirement for legal support. CONCLUSIONS: This work demonstrates the value of social media data as a resource for in-depth examination of caregivers' experience after a dementia diagnosis. It is important to study groups actively posting online, both in topic-specific and general communities, as they are most likely to benefit from novel internet-based support systems or interventions.

Type: Article
Title: Mining Social Media Data to Study the Consequences of Dementia Diagnosis on Caregivers and Relatives
Location: Switzerland
Open access status: An open access version is available from UCL Discovery
DOI: 10.1159/000509123
Publisher version: http://dx.doi.org/10.1159/000509123
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: Automated analysis, Impact dementia diagnosis, Reddit, Social media
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Health Informatics
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Health Informatics > Clinical Epidemiology
URI: https://discovery.ucl.ac.uk/id/eprint/10111314
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