Investigation of Carers' Perspectives of Dementia Misconceptions on Twitter: Focus Group Study

Georgie Hudson; Sonja M Jansli; Sinan Erturk; Daniel Morris; Clarissa M Odoi; Angela Clayton-Turner; Vanessa Bray; Gill Yourston; Doreen Clouden; David Proudfoot; Andrew Cornwall; Claire Waldron; Til Wykes; Sagar Jilka

doi:10.2196/30388

Investigation of Carers' Perspectives of Dementia Misconceptions on Twitter: Focus Group Study

JMIR Aging. 2022 Jan 24;5(1):e30388. doi: 10.2196/30388.

Authors

Georgie Hudson^#^{1

2}, Sonja M Jansli^#^{1

2}, Sinan Erturk^{1

2}, Daniel Morris^{1

2}, Clarissa M Odoi^{1

2}, Angela Clayton-Turner¹, Vanessa Bray¹, Gill Yourston¹, Doreen Clouden¹, David Proudfoot¹, Andrew Cornwall¹, Claire Waldron¹, Til Wykes^{1

2}, Sagar Jilka^{1

2

3}

Affiliations

¹ Institute of Psychiatry, Psychology, and Neuroscience, King's College London, London, United Kingdom.
² South London and Maudsley NHS Foundation Trust, London, United Kingdom.
³ Warwick Medical School, University of Warwick, Coventry, United Kingdom.

^# Contributed equally.

PMID: 35072637
PMCID: PMC8822432
DOI: 10.2196/30388

Abstract

Background: Dementia misconceptions on social media are common, with negative effects on people with the condition, their carers, and those who know them. This study codeveloped a thematic framework with carers to understand the forms these misconceptions take on Twitter.

Objective: The aim of this study is to identify and analyze types of dementia conversations on Twitter using participatory methods.

Methods: A total of 3 focus groups with dementia carers were held to develop a framework of dementia misconceptions based on their experiences. Dementia-related tweets were collected from Twitter's official application programming interface using neutral and negative search terms defined by the literature and by carers (N=48,211). A sample of these tweets was selected with equal numbers of neutral and negative words (n=1497), which was validated in individual ratings by carers. We then used the framework to analyze, in detail, a sample of carer-rated negative tweets (n=863).

Results: A total of 25.94% (12,507/48,211) of our tweet corpus contained negative search terms about dementia. The carers' framework had 3 negative and 3 neutral categories. Our thematic analysis of carer-rated negative tweets found 9 themes, including the use of weaponizing language to insult politicians (469/863, 54.3%), using dehumanizing or outdated words or statements about members of the public (n=143, 16.6%), unfounded claims about the cures or causes of dementia (n=11, 1.3%), or providing armchair diagnoses of dementia (n=21, 2.4%).

Conclusions: This is the first study to use participatory methods to develop a framework that identifies dementia misconceptions on Twitter. We show that misconceptions and stigmatizing language are not rare. They manifest through minimizing and underestimating language. Web-based campaigns aiming to reduce discrimination and stigma about dementia could target those who use negative vocabulary and reduce the misconceptions that are being propagated, thus improving general awareness.

Keywords: Alzheimer’s Disease; Twitter; co-production; dementia; misconceptions; patient and public involvement; social media; stigma.

©Georgie Hudson, Sonja M Jansli, Sinan Erturk, Daniel Morris, Clarissa M Odoi, Angela Clayton-Turner, Vanessa Bray, Gill Yourston, Doreen Clouden, David Proudfoot, Andrew Cornwall, Claire Waldron, Til Wykes, Sagar Jilka. Originally published in JMIR Aging (https://aging.jmir.org), 24.01.2022.