ArticleDementia (London, England)2021
The use of Twitter by people with young-onset dementia: A qualitative analysis of narratives and identity formation in the age of social media.
Article in Dementia (London, England), 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 2 of them syntheses that pooled it.
What it found
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
15 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- The Experience of Stigma Within the Young Onset Dementia (YOD) Population: A Systematic Review of Qualitative Research.Health expectations : an international journal of public participation in health care and health policy · 2026Pooled it
- Technological interventions in European dementia care: a systematic review of acceptance and attitudes among people living with dementia, caregivers, and healthcare workers.Frontiers in neurology · 2024Pooled it
- Exploring the Experiences of Moderators From an Asynchronous Online Dementia Support Forum: Qualitative Interview Study.JMIR formative research · 2026Article
- Social media engagement and professional identity among Indonesian medical students: a cross-sectional analysis of patterns, intensity, and correlation.Korean journal of medical education · 2026Article
- Use of adapted or modified methods with people with dementia in research: A scoping review.Dementia (London, England) · 2023Article
- Investigating the Readability and Linguistic, Psychological, and Emotional Characteristics of Digital Dementia Information Written in the English Language: Multitrait-Multimethod Text Analysis.JMIR formative research · 2023Article
- Understanding Barriers Along the Patient Journey in Alzheimer's Disease Using Social Media Data.Neurology and therapy · 2023Article
- Using digital technologies to facilitate social inclusion during the COVID-19 pandemic: Experiences of co-resident and non-co-resident family carers of people with dementia from DETERMIND-C19.International journal of geriatric psychiatry · 2023Article
- Blogging with dementia: Writing about lived experience of dementia in the public domain.Dementia (London, England) · 2022Article
- Examining the Twitter Discourse on Dementia During Alzheimer's Awareness Month in Canada: Infodemiology Study.JMIR formative research · 2022Article
- Everyday Experiences of People Living with Mild Cognitive Impairment or Dementia: A Scoping Review.International journal of environmental research and public health · 2022Article
- Using Twitter to understand perspectives and experiences of dementia and caregiving at the beginning of the COVID-19 pandemic.Dementia (London, England) · 2022Article
- Social Media and Online Digital Technology Use Among Muslim Young People and Parents: Qualitative Focus Group Study.JMIR pediatrics and parenting · 2022Article
- The use of digital technologies by people with mild-to-moderate dementia during the COVID-19 pandemic: A positive technology perspective.Dementia (London, England) · 2022Article
- Understanding the Emotional Intelligence Discourse on Social Media: Insights from the Analysis of Twitter.Journal of Intelligence · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
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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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.