How people with dementia use twitter: A qualitative analysis

Talbot, Catherine V.; O’Dwyer, Siobhan; Clare, Linda; Heaton, Janet; Anderson, Joel

doi:10.1016/j.chb.2019.08.005

Cited by 55 publications

(57 citation statements)

References 36 publications

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“…Researchers could therefore consider alternative means of promoting a sense of purpose and identity among people with dementia. Digital solutions may hold some promise, with researchers reporting that everyday technologies such as social media provide a way for people with dementia to engage with communities [ 14 ]. These technologies could potentially combat the shrinking world imposed by both the pandemic and the diagnosis itself.…”

Section: Discussionmentioning

confidence: 99%

‘Getting back to normality seems as big of a step as going into lockdown’: the impact of the COVID-19 pandemic on people with early to middle stage dementia

Talbot

Briggs

2021

Age and Ageing

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People with dementia can experience a shrinkage of their social worlds, leading to a loss of independence, control, and reduced wellbeing. We used “the shrinking world” theory to examine how the COVID 19 pandemic has impacted the lives of people with early-middle stage dementia and what longer-term impacts may result. Interviews were conducted with 19 people with dementia and a thematic analysis generated five themes: The forgotten person with dementia; Confusion over government guidance; Deterioration of cognitive function; Loss of meaning and social isolation; Safety of the lockdown bubble. The findings suggest that the pandemic has accelerated the “shrinking world” effect and created a tension in how people with dementia perceive the outside world. Participants felt safe and secure in lockdown but also missed the social interaction, cognitive stimulation, and meaningful activities that took place outdoors. As time in lockdown continued, these individuals experienced a loss of confidence and were anxious about their ability to re-engage in the everyday practices that allow them to participate in society. We recommend ways in which the government, communities, and organisations might counteract some of the harms posed by this shrinking world.

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Section: Discussionmentioning

confidence: 99%

‘Getting back to normality seems as big of a step as going into lockdown’: the impact of the COVID-19 pandemic on people with early to middle stage dementia

Talbot

Briggs

2021

Age and Ageing

Self Cite

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“…Twitter is a social media and microblogging website where users share their posts with the public. Following on existing studies, there is a general consensus that tweets posted publicly on Twitter can be used for research [15,16]. Tweets on the Twitter website are located within the public domain; informed consent was not obtained.…”

Section: Recruitmentmentioning

confidence: 99%

Using Twitter to Understand the COVID-19 Experiences of People With Dementia: Infodemiology Study

Bacsu¹,

O’Connell²,

Cammer³

et al. 2021

J Med Internet Res

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Background The COVID-19 pandemic is affecting people with dementia in numerous ways. Nevertheless, there is a paucity of research on the COVID-19 impact on people with dementia and their care partners. Objective Using Twitter, the purpose of this study is to understand the experiences of COVID-19 for people with dementia and their care partners. Methods We collected tweets on COVID-19 and dementia using the GetOldTweets application in Python from February 15 to September 7, 2020. Thematic analysis was used to analyze the tweets. Results From the 5063 tweets analyzed with line-by-line coding, we identified 4 main themes including (1) separation and loss; (2) COVID-19 confusion, despair, and abandonment; (3) stress and exhaustion exacerbation; and (4) unpaid sacrifices by formal care providers. Conclusions There is an imminent need for governments to rethink using a one-size-fits-all response to COVID-19 policy and use a collaborative approach to support people with dementia. Collaboration and more evidence-informed research are essential to reducing COVID-19 mortality and improving the quality of life for people with dementia and their care partners.

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“…This study was part of a larger multipart study that examined the use of Twitter by people with dementia over time (Talbot, 2020;Talbot et al, 2020aTalbot et al, , 2020b. In this article, we present the findings of a thematic analysis of repeat interviews conducted with people with dementia about their use of Twitter.…”

Section: Designmentioning

confidence: 99%

The use of Twitter by people with young-onset dementia: A qualitative analysis of narratives and identity formation in the age of social media

et al. 2021

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A diagnosis of dementia in midlife can be challenging, causing losses or changes in a person’s identity. Narrative provides a means of reconstructing identity and can be communicated on social media. There has been initial evidence on the value of Twitter for people with dementia, but researchers have not yet directly engaged with users’ perspectives. We employed a narrative model of identity to examine why people with dementia use Twitter and what challenges they face. Interviews were conducted with 11 younger people with dementia and analysed thematically. Participants used Twitter to counter a loss of identity through community membership and by regaining a sense of purpose. They sought to redefine dementia identities by challenging stigma and campaigning for social change. The character limit of tweets facilitated narrative through which participants preserved their identities. These findings suggest that Twitter could be an important source of post-diagnostic support for people with young-onset dementia. However, there are some risks as Twitter was sometimes a hostile environment for individuals who did not present in a ‘typical’ manner, or faced technical difficulties because of their symptoms. In the future, platform developers could work with people with dementia to make Twitter more accessible for this group.

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How people with dementia use twitter: A qualitative analysis

Cited by 55 publications

References 36 publications

‘Getting back to normality seems as big of a step as going into lockdown’: the impact of the COVID-19 pandemic on people with early to middle stage dementia

‘Getting back to normality seems as big of a step as going into lockdown’: the impact of the COVID-19 pandemic on people with early to middle stage dementia

Using Twitter to Understand the COVID-19 Experiences of People With Dementia: Infodemiology Study

The use of Twitter by people with young-onset dementia: A qualitative analysis of narratives and identity formation in the age of social media

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