Beyond stigma and biomedical frameworks: Humanizing dementia care through narratives

Abstract

Contemporary biomedical and pathologizing interpretations of dementia negatively affect the quality of care and limit the narrative agency of people living with the condition. Although the progression of dementia involves a decline in memory, communicative clarity, and reasoning, personhood can be conveyed through narratives, social interaction, and embodied communication. In advanced stages of dementia, especially, the body itself becomes a narrative medium, and acknowledging its agency can function as an act of care per se. This article advocates for the need for more critical humanities-based research and ethical narrative approaches in order to challenge the stigma of dementia and humanize its reductionist representations. The adoption of alternative, relational, and inclusive narratives can support more responsive care practices and policies that are better aligned with the experiences and needs of individuals with dementia. In particular, the article foregrounds the value of literature as a means to better understand the complexities of dementia and ensure epistemic justice. It outlines future directions in dementia research grounded in humanities-based inquiry and a commitment to dignity, both in interpreting and bearing witness to the voices of people with dementia. Ultimately, the article calls for a broader shift within gerontology to recognize and integrate the epistemological contributions that literature and the humanities can offer.