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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.
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This perspective article describes the experiences of engaging people with lived experience of dementia in research meetings and events from the perspectives of people with lived experience, researchers, trainees, audience members and others. We outline examples of engagement from different events and describe a video project, initiated by people with lived experience, conveying diverse views about becoming integral collaborators in the Canadian Consortium on Neurodegeneration in Aging (CCNA) annual Partners Forum and Science Days. We also report evaluation data from audiences and present a series of tips and strategies for facilitating this engagement, including practical considerations for supporting people with lived experience.
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INTRODUCTION: Dementia-related stigma reduces the quality of life of people living with dementia and their care partners. However, there is a dearth of literature synthesising knowledge on stigma of dementia during the COVID-19 pandemic. This scoping review protocol outlines a methodology that will be used to understand the impact of stigma on people living with dementia during the pandemic. Addressing dementia-related stigma is critical to promoting timely dementia diagnoses and enhancing the quality of life for people living with dementia and their care partners. METHODS AND ANALYSIS: This review will follow the Arksey and O'Malley methodological framework and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews checklist. The review will focus on English-language, peer-reviewed literature published between 13 January 2020 and 30 June 2023. Stigma will be broadly defined according to pre-established components (stereotypes, prejudice and discrimination). We will search six databases including CINAHL, EMBASE, Google Scholar, Medline, PsycINFO and Web of Science. We will also hand-search the reference lists of relevant articles to identify additional manuscripts. Two reviewers will develop the data extraction table, as well as independently conduct the data screening. Any disagreements will be resolved through open discussion between the two researchers, and if necessary, by consulting the full team to achieve consensus. Data synthesis will be conducted using an inductive thematic analysis approach. ETHICS AND DISSEMINATION: This review will be the first to explore the impact of dementia-related stigma during the COVID-19 pandemic. An advisory panel including a person living with dementia and a care partner will be consulted to inform our review's findings and support the data dissemination process. The results of this scoping review will be shared and disseminated through publication in a peer-reviewed journal, presentations at academic conferences, a community workshop and webinars with various stakeholders.