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.