Social aspects of privacy in technologically assisted dementia care

Technical assistance systems (TA) are increasingly used in the care of people with dementia (PwD). A central ethical concern in this context is the potential violation of privacy. However, the prevailing debate – shaped largely by liberal traditions – tends to conceptualize privacy in terms of individual autonomy. Yet PwD progressively lose their capacity for autonomous decision-making, and their everyday lives are shaped by close caregiving relationships. This study adopts an empirically informed medical ethics approach to examine the value of privacy for PwD and the role of interpersonal relationships in this context. Drawing on 12 interviews with PwD and 15 with caregiving relatives, the findings show that privacy remains a meaningful value for PwD, independently of individual autonomy, and is closely tied to their well-being. Moreover, privacy and relationships emerge as mutually constitutive: on the one hand, privacy supports the maintenance of meaningful relationships; on the other, close relationships can enable PwD to experience and preserve privacy. These insights carry concrete ethical implications for the design and implementation of TA systems, as well as for the medical care of PwD.