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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)

The final, peer-reviewed published version of this preprint can be found here:

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

Bacsu JD, O'Connell M, Cammer A, Azizi M, Grewal K, Poole L, Greene S, Sivananthan S, Spiteri RJ

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

J Med Internet Res 2021;23(2):e26254

DOI: 10.2196/26254

PMID: 33468449

PMCID: 7861035

Using Twitter to understand the COVID-19 experiences of people living with dementia

  • Juanita Dawne Bacsu; 
  • Megan O'Connell; 
  • Allison Cammer; 
  • Mahsa Azizi; 
  • Karl Grewal; 
  • Lisa Poole; 
  • Shoshana Greene; 
  • Saskia Sivananthan; 
  • Raymond J. Spiteri

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

Please cite as:

Bacsu JD, O'Connell M, Cammer A, Azizi M, Grewal K, Poole L, Greene S, Sivananthan S, Spiteri RJ

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

J Med Internet Res 2021;23(2):e26254

DOI: 10.2196/26254

PMID: 33468449

PMCID: 7861035

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