“The right to be heard: exploring epistemic injustice in dementia care. A qualitative study”

Vollständiger Abstract

Worum geht es in dieser Arbeit?

Abstract Background and Objectives Epistemic injustice, introduced by philosopher Miranda Fricker in 2007, refers to harm affecting individuals as knowers because of social prejudices and stereotyping. This leads to the partial or complete exclusion of certain individuals from knowledge building. People living with dementia are particularly vulnerable because cognitive impairments may reinforce assumptions about reduced credibility, marginalising their voices in clinical, social and family contexts and limiting opportunities to exercise epistemic agency. This research examines how people living with dementia experience epistemic injustice in everyday life and how it shapes their participation as knowers in clinical, social, and family contexts. Research Design and Methods A qualitative study using semi-structured interviews with a conversational approach was conducted. Participants (N = 15) with a dementia diagnosis were interviewed in their homes or nursing homes. Interviews were audio-recorded, transcribed, and analysed thematically to identify recurring patterns and meanings. Results Three interconnected domains were identified: epistemic marginalisation in clinical encounters, everyday negotiation of competence and agency, and epistemic invalidation and silencing in interpersonal relationships. Participants often perceived these experiences as appropriate or expected rather than unjust, reflecting internalised stigma. Many felt their perspectives were no longer recognised as valuable, leading to withdrawal from care and communication and fewer opportunities to contribute their knowledge. Discussion and Implications Epistemic injustice extends beyond healthcare, affecting everyday and family interactions by progressively limiting opportunities for people living with dementia to participate as credible knowers. Its normalisation fosters self-silencing, perpetuating disempowerment and social exclusion.