Using Twitter to Examine Stigma Against People With Dementia During COVID-19: Infodemiology Study

Abstract

Background During the pandemic, there has been significant social media attention focused on the increased COVID-19 risks and impacts for people with dementia and their care partners. However, these messages can perpetuate misconceptions, false information, and stigma. Objective This study used Twitter data to understand stigma against people with dementia propagated during the COVID-19 pandemic. Methods We collected 1743 stigma-related tweets using the GetOldTweets application in Python from February 15 to September 7, 2020. Thematic analysis was used to analyze the tweets. Results Based on our analysis, 4 main themes were identified: (1) ageism and devaluing the lives of people with dementia, (2) misinformation and false beliefs about dementia and COVID-19, (3) dementia used as an insult for political ridicule, and (4) challenging stigma against dementia. Social media has been used to spread stigma, but it can also be used to challenge negative beliefs, stereotypes, and false information. Conclusions Dementia education and awareness campaigns are urgently needed on social media to address COVID-19-related stigma. When stigmatizing discourse on dementia is widely shared and consumed amongst the public, it has public health implications. How we talk about dementia shapes how policymakers, clinicians, and the public value the lives of people with dementia. Stigma perpetuates misinformation, pejorative language, and patronizing attitudes that can lead to discriminatory actions, such as the limited provision of lifesaving supports and health services for people with dementia during the pandemic. COVID-19 policies and public health messages should focus on precautions and preventive measures rather than labeling specific population groups.

Social media discussions about long-term care and the COVID-19 pandemic

“…Our findings parallel previous research on the prevalence of negative sentiments about aging (i.e., highlighting problems of old age and negative physical and functional implications of aging) on social media platforms ( Makita, Mas-Bleda, Stuart, & Thelwall, 2021 ). In particular, our findings are consistent with previous research highlighting social media posts containing ageist and stigmatizing content about older adults during COVID-19 ( Bacsu et al, 2022 ; Barrett, Michael, & Padavic, 2021 ; Jimenez-Sotomayor et al, 2020 ). Furthermore, the discourse on social media platforms during the COVID-19 pandemic contained posts perpetuating intergenerational divisions ( Soto-Perez-de-Celis, 2020 ).…”

“…Other researchers have investigated public perceptions about people living with dementia based on Twitter posts (e.g., Cheng, Liu, & Woo, 2018 ; Robillard, Johnson, Hennessey, Beattie, & Illes, 2013 ). Bacsu et al (2022) , for example, identified Twitter post themes relating to misinformation, the perpetuation of ageist beliefs, as well as challenging the stigma against dementia during the pandemic.…”

Neighborhood Social Cohesion and Dementia-Related Stigma Among Mothers of Adolescents in the Pre- and Current COVID-19 Period: An Observational Study Using Population-Based Cohort Data

“…Since significant social media attention focused on the increased COVID-19 risks and impacts for peo-ple with dementia, there were increased concerns that dementia-related stigma could have been spread on social media during the pandemic [42]. Our study is the first to quantify the level of dementia-related stigma before and during the pandemic.…”

Examining the Twitter Discourse on Dementia During Alzheimer’s Awareness Month in Canada: Infodemiology Study

“…Each tweet was coded independently by 2 coders to support intercoder reliability. All of our coders were experienced in conducting thematic analysis and have had previous experience in coding tweets [ 20 ]. Any coding uncertainties or disputes were resolved through discussion and consensus with 2 coders.…”