Using Twitter to understand perspectives and experiences of dementia and caregiving at the beginning of the COVID-19 pandemic

Bartmess, Marissa; Talbot, Catherine V.; O’Dwyer, Siobhan; Lopez, Ruth Palan; Rose, Karen; Anderson, Joel

doi:10.1177/14713012221096982

Cited by 9 publications

(14 citation statements)

References 69 publications

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“…Similar to existing studies [ 36 , 37 ], our study on Twitter discourse found that many tweets shared experiences of dementia. More specifically, people shared personal narratives related to issues of grief, bereavement, and death of family members with dementia.…”

Section: Discussionsupporting

confidence: 87%

Examining the Twitter Discourse on Dementia During Alzheimer’s Awareness Month in Canada: Infodemiology Study

Bacsu¹,

Cammer²,

Ahmadi³

et al. 2022

JMIR Form Res

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Background Twitter has become a primary platform for public health campaigns, ranging from mental health awareness week to diabetes awareness month. However, there is a paucity of knowledge about how Twitter is being used during health campaigns, especially for Alzheimer’s Awareness Month. Objective The purpose of our study was to examine dementia discourse during Canada’s Alzheimer’s Awareness Month in January to inform future awareness campaigns. Methods We collected 1289 relevant tweets using the Twint application in Python from January 1 to January 31, 2022. Thematic analysis was used to analyze the data. Results Guided by our analysis, 4 primary themes were identified: dementia education and advocacy, fundraising and promotion, experiences of dementia, and opportunities for future actions. Conclusions Although our study identified many educational, promotional, and fundraising tweets to support dementia awareness, we also found numerous tweets with cursory messaging (ie, simply referencing January as Alzheimer’s Awareness Month in Canada). While these tweets promoted general awareness, they also highlight an opportunity for targeted educational content to counter stigmatizing messages and misinformation about dementia. In addition, awareness strategies partnering with diverse stakeholders (such as celebrities, social media influencers, and people living with dementia and their care partners) may play a pivotal role in fostering dementia dialogue and education. Further research is needed to develop, implement, and evaluate dementia awareness strategies on Twitter. Increased knowledge, partnerships, and research are essential to enhancing dementia awareness during Canada’s Alzheimer’s Awareness Month and beyond.

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Section: Discussionsupporting

confidence: 87%

Examining the Twitter Discourse on Dementia During Alzheimer’s Awareness Month in Canada: Infodemiology Study

Bacsu¹,

Cammer²,

Ahmadi³

et al. 2022

JMIR Form Res

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“…Structural stigma (institutional policies and practices) was strongly connected to the theme of human rights and deprived dignity. More specifically, the right to life and dignity were substantial COVID-19 issues impacting people living with dementia ( 22 , 23 , 34 ). Human rights issues were often related to institutional COVID-19 policies, lockdowns, social isolation, confinement, elder abuse, restraint use, overmedication, overcrowding, understaffing, and ageism, especially within institutional settings ( 34 ).…”

Section: Resultsmentioning

confidence: 99%

“…Cipriani and colleagues assert that the coronavirus brought an increase in social isolation, loneliness, and seclusion for people living with dementia ( 23 ). Moreover, inequitable access to ventilators and life-saving services challenged the right to life and raised ethical concerns for people with dementia ( 22 , 23 , 34 ). Family care partners often felt pressured to sign do not resuscitate orders, and people living with dementia were not provided with the same level of care or medical interventions (e.g., ventilators, vaccinations, physician visits, acute care beds, etc.)…”

Section: Resultsmentioning

confidence: 99%

Understanding stigma of dementia during COVID-19: a scoping review

Bacsu,

Spiteri,

Nanson

et al. 2024

Front. Psychiatry

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IntroductionStigma of dementia is one of the greatest challenges for people living with dementia. However, there is little research on the different types of stigma of dementia in the COVID-19 pandemic. The purpose of this scoping review is to synthesize the existing literature on dementia-related stigma (self, public, and structural stigma), during the pandemic.MethodsGuided by Arksey and O’Malley’s scoping review framework and PRISMA guidelines, CINAHL, EMBASE, Google Scholar, Medline, PsycINFO, and Web of Science were searched for English language literature from January 2020 to June 2023. Inclusion criteria consisted of peer-reviewed, original research articles addressing stigma of dementia during the COVID-19 pandemic. Thematic analysis was used to analyze the data and steps were taken to ensure rigor.ResultsFifteen articles met our inclusion criteria. Four primary themes were identified including: 1) COVID-19 stereotypes and assumptions of dementia; 2) human rights issues and deprived dignity; 3) disparate access to health services and supports; and 4) cultural inequities and distrust.DiscussionThe COVID-19 pandemic has contributed to the stigmatization of people living with dementia. Further research is needed to develop, implement, and evaluate interventions targeted towards the different types of dementia-related stigma (including self, public, and structural stigma). Moreover, our findings highlight the need for more collaborative research that prioritizes the lived experience and input of diverse people living with dementia. Research partnerships with diverse people living with dementia are vital to improving future pandemic planning. Only through evidence-informed research and lived experience can we begin to fully address the different types of dementia-related stigma and enhance the quality of life of people living with dementia.

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“…Given that existing Twitter studies already explore the early stages of the pandemic (ie, February 15-September 7, 2020, and March 17-24, 2020) on people with dementia [ 19 , 21 ], our study’s time frame focused further into the pandemic (ie, September 8, 2020, to December 8, 2021). Our full set of search terms included “dementia” OR “Alzheimer” used in combination with “COVID-19” OR “COVID” OR “Corona,” resulting in 110,528 tweets.…”

Section: Methodsmentioning

confidence: 99%

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

Bacsu¹,

O’Connell²,

Cammer³

et al. 2022

JMIR Aging

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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.

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Using Twitter to understand perspectives and experiences of dementia and caregiving at the beginning of the COVID-19 pandemic

Cited by 9 publications

References 69 publications

Examining the Twitter Discourse on Dementia During Alzheimer’s Awareness Month in Canada: Infodemiology Study

Examining the Twitter Discourse on Dementia During Alzheimer’s Awareness Month in Canada: Infodemiology Study

Understanding stigma of dementia during COVID-19: a scoping review

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

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