Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Dec 3, 2020
Open Peer Review Period: Dec 3, 2020 - Dec 9, 2020
Date Accepted: Jan 19, 2021
Date Submitted to PubMed: Jan 20, 2021
(closed for review but you can still tweet)
Using Twitter to understand the COVID-19 experiences of people living with dementia
ABSTRACT
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 was to understand the experiences of COVID-19 of people living 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 5,063 tweets analyzed with line by line coding, we identified four main themes including: i) separation and loss; ii) COVID confusion, despair, and abandonment; iii) stress and exhaustion exacerbation; and iv) 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 lives for people with dementia and their care partners.
Citation
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Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.