CHANGING GAZE, CHANGING PERCEPTION: HOW PARTICIPATORY PERFORMATIVE AND VISUAL ART-PRACTICES CAN EMPOWER PEOPLE WITH DEMENTIA AND THEIR CAREGIVERS TO COPE WITH THE CONDITION
Despite advances in diagnostic methods, dementia remains a progressive and incurable condition. Individuals diagnosed with dementia, together with those in their immediate social environment, are confronted not only with the diagnosis itself but also with the social stigma surrounding it. The stigmatising attitudes prevalent among people living with dementia, their family members, and society at large are detrimental to the progression of the condition, and may even exacerbate diagnostic and therapeutic challenges.
The overarching aim of this interdisciplinary PhD project is to deepen our understanding of the lived experiences of individuals with dementia and their informal caregivers. Drawing on innovative participatory, multi-sensory, and arts-based methodologies, combined with creative analytical practices, the project investigates how interventions can be designed to foster the well-being, sense of self, and personhood of those living with dementia. Ultimately, the project seeks to empower people with dementia, their caregivers, and their families to cope more effectively with the condition, while actively challenging and transforming prevailing stigmatizing perceptions. In doing so, it aims to prevent a general decline in well-being and to promote timely and appropriate access to care.
Interdisciplinarity is central to the project’s design, as reflected in the collaboration with a second doctoral researcher (pursuing a PhD in the social sciences) who will contribute from a distinct yet complementary field of expertise. The project further engages in close collaboration with the Media and Culture Lab (Faculty of Social Sciences, KU Leuven), the DementiaLab of the research unit in Genk (LUCA School of Arts Genk), the Flemish Expertise Centre on Dementia, and De Wingerd residential care centre—one of Belgium’s leading institutions for people with dementia.
