I'm still here and my opinion matters: a scoping review on the experience of epistemic injustice among people living with dementia

Epistemic injustice refers to wrongs done to individuals in their capacity as knowers, often due to prejudice or stereotypes. People living with dementia (PLWD) are particularly vulnerable to epistemic injustice due to the cognitive, emotional and social aspects of their condition and this could negatively affect their quality of life. This scoping review aims to map the available evidence on how epistemic injustice can influence the experience of PLWD. By adopting the PRISMA and Joanna Briggs Institute guidance for scoping reviews, we included peer-reviewed and grey literature in English that describe the relation between the presence of epistemic injustice (concept) and the experience of PLWD (population) across different geographical and cultural contexts (context). Searches in academic databases (Web of Science, Proquest, PubMed, Scopus and EbscoHost) and among grey literature (OpenAlex and AlmaStart Discovery Tool) were conducted in November 2024. Two independent reviewers screened abstracts and full texts. A thematic analysis of the results was carried out. We included 10 studies, of which 7 from database searches, 2 from grey literature and 1 from reference lists of included studies. There was high methodological heterogeneity but most of the included studies were theoretical reflections. PLWD can experience epistemic injustice and are often excluded from clinical interactions and academic research due to communication challenges and difficulties in obtaining informed consent. Even when included in clinical practice and research, their voices are often not valued, limiting their involvement in decisions like advance directives, reinforcing negative stereotypes.