Looking at the Personhood of Non-Verbal Persons with Dementia Through the Eyes of Their Carers: A Cultural Probe Study

The study presented in this paper is part of the interdisciplinary research project, Blink. which aims to improve the person-centered care (PCC) offered to non-verbal persons permanently residing in care facilities by researching ways to define, access, and integrate their personhood into their daily care. This paper discusses a cultural probe study aimed at accessing the personhood of persons with late-stage dementia through the eyes of their carers. The results from this study will aid the development of a tool(kit) that supports carers and care facilities in developing and implementing their PCC practices. Drawing inspiration from Kitwood's concept of personhood, this study seeks to explore carer's viewpoints, attitudes, and beliefs concerning their own personhood, roles, and profession, as well as their interactions with routines, spaces, objects, and other persons—all in relation to their caregiving responsibilities and the persons with late-stage dementia under their care. Additionally, the research aims to shed light on their perceived reality, barriers, and aspirations related to the discussed care context. By collecting this information, the study aims to uncover important insights into how persons with late-stage dementia are perceived and valued by those around them, and if or how these results are reflected within a care context. Lastly, the results from this study will also aid in the development of the final tool(kit) by providing valuable insight into carers as future users. This study included six direct carers working with persons with late-stage dementia in three different care facilities in Flanders, Belgium. The analysis of the results revealed themes and challenges faced by these carers, as well as insight into how their perceived roles influence their caregiving practices. Additionally, the study provides essential design directions for the final tool(kit)’s development.