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.
Keywords: COVID-19; Twitter; collaborate; dementia; disorder; experience; health policy; quality of life; social media; support; theme.
©Juanita-Dawne Bacsu, Megan E O'Connell, Allison Cammer, Mahsa Azizi, Karl Grewal, Lisa Poole, Shoshana Green, Saskia Sivananthan, Raymond J Spiteri. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 03.02.2021.