Examining the Impact of COVID-19 on People With Dementia From the Perspective of Family and Friends: Thematic Analysis of Tweets

Juanita-Dawne R Bacsu; Megan E O'Connell; Allison Cammer; Soheila Ahmadi; Corinne Berger; Mehrnoosh Azizi; Rory Gowda-Sookochoff; Karl S Grewal; Shoshana Green; Sheida Knight; Raymond J Spiteri

doi:10.2196/38363

Examining the Impact of COVID-19 on People With Dementia From the Perspective of Family and Friends: Thematic Analysis of Tweets

JMIR Aging. 2022 Jun 27;5(2):e38363. doi: 10.2196/38363.

Affiliations

¹ Department of Psychology, University of Saskatchewan, Saskatoon, SK, Canada.
² College of Pharmacy and Nutrition, University of Saskatchewan, Saskatoon, SK, Canada.
³ Department of Computer Science, University of Saskatchewan, Saskatoon, SK, Canada.

PMID: 35667087
PMCID: PMC9239564
DOI: 10.2196/38363

Abstract

Background: The COVID-19 pandemic is taking a serious toll on people with dementia. Given the rapidly evolving COVID-19 context, policymakers and practitioners require timely, evidence-informed research to address the changing needs and challenges of people with dementia and their family care partners.

Objective: Using Twitter data, the objective of this study was to examine the COVID-19 impact on people with dementia from the perspective of their family members and friends.

Methods: Using the Twint application in Python, we collected 6243 relevant tweets over a 15-month time frame. The tweets were divided among 11 coders and analyzed using a 6-step thematic analysis process.

Results: Based on our analysis, 3 main themes were identified: (1) frustration and structural inequities (eg, denied dignity and inadequate supports), (2) despair due to loss (eg, isolation, decline, and death), and (3) resiliency, survival, and hope for the future.

Conclusions: As the COVID-19 pandemic persists and new variants emerge, people with dementia and their family care partners are facing complex challenges that require timely interventions. More specifically, tackling COVID-19 challenges requires revisiting pandemic policies and protocols to ensure equitable access to health and support services, recognizing the essential role of family care partners, and providing financial assistance and resources to help support people with dementia in the pandemic. Revaluating COVID-19 policies is critical to mitigating the pandemic's impact on people with dementia and their family care partners.

Keywords: Alzheimer disease; COVID-19; Twitter; aging; caregiver; coronavirus 2019; dementia; elderly population; older adult; online health community; peer support; social media; support service; thematic analysis.

©Juanita-Dawne R Bacsu, Megan E O'Connell, Allison Cammer, Soheila Ahmadi, Corinne Berger, Mehrnoosh Azizi, Rory Gowda-Sookochoff, Karl S Grewal, Shoshana Green, Sheida Knight, Raymond J Spiteri. Originally published in JMIR Aging (https://aging.jmir.org), 27.06.2022.