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

Juanita-Dawne R Bacsu; Raymond J Spiteri; Kate Nanson; Zahra Rahemi; Claire Webster; Myrna Norman; Chantelle Stone

doi:10.3389/fpsyt.2024.1261113

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

Front Psychiatry. 2024 Mar 27:15:1261113. doi: 10.3389/fpsyt.2024.1261113. eCollection 2024.

Authors

Juanita-Dawne R Bacsu¹, Raymond J Spiteri², Kate Nanson¹, Zahra Rahemi³, Claire Webster⁴, Myrna Norman⁵, Chantelle Stone⁶

Affiliations

¹ School of Nursing, Thompson Rivers University, Kamloops, BC, Canada.
² Department of Computer Science, University of Saskatchewan, Saskatoon, SK, Canada.
³ School of Nursing, Clemson University, Clemson, SC, United States.
⁴ Caregiver Crosswalk Inc, Montreal, QC, Canada.
⁵ Engagement of People with Lived Experience of Dementia (EPLED), Maple Ridge, BC, Canada.
⁶ Department of Psychology, Thompson Rivers University, Kamloops, BC, Canada.

Abstract

Introduction: Stigma 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.

Methods: Guided 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.

Results: Fifteen 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.

Discussion: The 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.

Keywords: COVID-19; dementia; discrimination; negative attitudes; prejudice; stereotypes; stigma.

Publication types

Systematic Review

Grants and funding

The author(s) declare financial support was received for the research, authorship, and/or publication of this article. This research was funded by the Canada Research Chairs Program [grant number 2021-00174]. In addition, funding was provided by the Internal Research Fund at Thompson Rivers University to support student research assistants, KN and CS.