Renegotiating Autonomy in Early-Stage Dementia: Stigma, Disclosure, and Identity

This study aimed to explore how individuals living with early-stage dementia experience stigma and disclosure, and how these processes contribute to the renegotiation of autonomy, identity and social participation in everyday life.

An interpretive qualitative design was employed. Semi-structured interviews were conducted with 20 individuals diagnosed with early-stage dementia within the past 2 years, recruited from a neurology clinic in northwestern Türkiye. Data were analysed using reflexive thematic analysis.

Four interrelated themes were identified, forming a conceptual sequence: vulnerability and continuity in identity, anticipated stigma and disclosure strategies, renegotiation of autonomy in everyday life and changing patterns of social participation and psychosocial support needs. Participants described autonomy not as lost, but as relationally and culturally renegotiated through interactions with family members and social networks, shaped by decisions about disclosure.

Findings position early-stage dementia as a dynamic psychosocial experience in which stigma and disclosure processes directly shape how autonomy is renegotiated. The study underscores the importance of person-centred, stigma-sensitive care approaches that recognise the relational and cultural dimensions of autonomy.