A 'Good Death' with Dementia: Exploring Lived Experiences of Death, Dying, and Euthanasia in Self-Authored Dementia Blogs

Abstract

Understanding how people living with dementia (PLWD) conceptualize a ‘good death’ is crucial for quality end-of-life care. This thesis explores the perspectives of PLWD on death, dying, and medically assisted death through a thematic analysis of self-published blogs. The dataset consists of 433 entries written by 68 bloggers. Guided by narrative theory and critical disability theory, the analysis examines conceptions of a ‘good death,’ processes of coping and meaning-making in relation to dying, cultural misconceptions surrounding dementia in a Western context, and perspectives on self-chosen death. Findings illustrate how dementia complicates the desire to maintain dignity, autonomy, and identity amidst the dying process. ‘Good death’ constructions are also deeply influenced by cultural narratives that frame dementia as a ‘death sentence,’ as equivalent to end-stage incapacity, and as inherently intolerable. By centering first-person accounts, this thesis challenges dominant assumptions about dementia and underscores the value of lived experience in end-of-life scholarship.