TRANSCENDING TRAGEDY: MAINTAINING ENGAGEMENT AND RETAINING SELFHOOD OF PEOPLE LIVING WITH DEMENTIA

摘要

A central goal in supporting people living with dementia is maintaining selfhood, relationships, and well-being to preserve their innate human rights, which requires transcending the common focus on disease and disability. Prioritizing the person, rather than the disease, requires a shift away from the ubiquitous tragedy discourse. This presentation will describe research listening to people living with dementia and engaging them as partners. It will review perspectives on dementia gathered from among hundreds of people living with dementia in a series of listening sessions. Then, recognizing that people living with dementia are the true ‘experts’ and are capable of participating actively in supportive relationships, it will describe a research-based approach that uses authentic partnerships to include people living with dementia as equal partners in care and support. The presentation will conclude with eight catalyzing principles for transcending the tragedy discourse of Alzheimer’s.