Definition of the problemThe concept of privacy has been astonishingly absent in the discussion about dementia care. In general, questions of privacy receive a lot of attention in nursing ethics; however, when it comes to dementia care, hardly any systematic ethical debate on the topic can be found. It almost seems as though people with dementia had lost any comprehensible interest in privacy and no longer had any private sphere that needed to be considered or protected. However, this not only (...) contradicts widespread moral intuitions but also ignores the views and needs of those affected.ArgumentsWe first outline the origins and dimensions of the concept of privacy and point out problems and limitations in the context of dementia. Especially the prevalent liberal conceptions’ dependence on the idea of autonomy poses significant challenges to an adequate conceptualization of the moral significance of privacy for people with dementia. Therefore, we subsequently explore alternative ways of conceptualizing the “value of privacy” in the context of dementia care.ConclusionAutonomy-based concepts of privacy may still be valid in the early stages of dementia. However, in the further course of the syndrome, the relevance of other normative aspects comes to the fore, especially respect for remaining personal preferences as well as objective criteria of dignity and well-being. Thus, we outline in a differentiated manner how and to what extent privacy can be of normative importance beyond the purview of autonomy and should consequently be taken into consideration in dementia care. (shrink)

Monitoring and assistive technologies (MATs) are being used more frequently in healthcare. A central ethical concern is the compatibility of these systems with the moral preferences of their users—an issue especially relevant to participatory approaches within the ethics-by-design debate. However, users’ incapacity to communicate preferences or to participate in design processes, e.g., due to dementia, presents a hurdle for participatory ethics-by-design approaches. In this paper, we explore the question of how the value preferences of users in the field of dementia (...) care can be integrated into AI-based MATs. First, we briefly introduce different ethics-by-design approaches and explain the challenges they face in dementia care. Next, we introduce a novel approach for addressing these challenges. Through a qualitative content analysis of interviews with persons with dementia and their family caregivers (n = 27), we identified multiple ideal–typical value preference profiles. We then applied these profiles in a computer simulation, by which we also introduce the concept of ethical compliance quantification to scale the moral preferences of the interviewees for the simulation. Finally, we discuss study results, the advantages of using computer simulations, and general study limitations before drawing conclusions for further research. The study contributes to the ongoing debate on participatory ethics-by-design by defining on the basis of empirical data ideal–typical value preference frameworks that can be used to guide MAT actions and their outcomes. Going forward, MAT end-users with dementia and other communication-impaired persons could be enabled to choose a value profile that best fits their moral preferences. (shrink)

Background States and families are facing growing challenges provide adequate care for older persons. Smart home health technologies (SHHTs) in the forms of sensor or robotic devices have been discussed as technical solutions for caregiving. Ethical and social concerns are raised with the use of such technologies for caregiving purposes, a particularly prominent one being privacy. This paper contributes to the literature by distinguishing privacy concerns into both the type of technologies and conceptual dimensions.Methods Data for this paper stem from (...) sixty semi-structured interviews with older persons, informal, and formal caregivers living in the German-speaking regions of Switzerland. All information related to privacy, that were initially inductively coded, were thematically sorted into four dimensions of privacy (physical, psychological, social, and informational) and by the type of technologies studied.Results Participants were especially concerned about privacy intrusions from smart wearables and ambient sensors than robotic technologies, which may be due to the relative lack of familiarity with the latter. Informational privacy was evident in the context of data collection capacities and potential for misuses of data. The installation and implementation of both visual and ambient sensors induced discomfort to their senses of physical space. Alerts of smart wearables and obtrusive sightings of SHHTs garnered worries related to stigmatization and manipulation, indicating intrusions into end-users’ psychological privacy. Little discussions of social dimensions of privacy were evident in the data, even toward robotic technologies for their functions to promote social interactions for older persons.Conclusions This paper is one of the first that use the stratification approach on empirical data to highlight the multi-faceted privacy concerns when technologies may be implemented in elder care. Our paper could thus supports potential end-users in deciding which technologies to use and how to balance different privacy concerns against other values that they may hold important. (shrink)

Im Rahmen der Maßnahmen zur Eindämmung der Covid-19- Pandemie sind die Bürgerinnen und Bürger in Deutschland und vielen anderen Ländern dazu angehalten, weitestgehend in ihren Privatwohnungen zu bleiben. Wurde der Wert des Privaten in der liberalen Tradition gerade im Rückzug von und als Schutz vor der politischen Öffentlichkeit sowie administrativen Eingriffen gesehen, wird das Private damit nun unmittelbar politischen Anforderungen unterworfen. Indem die Kontrolle über die Gewährung und Verwehrung des Zugangs zum Privaten eingeschränkt worden ist und keinen frei gewählten Rückzugsort (...) mehr darstellt, verändert sich auch die Wahrnehmung lokaler Privatheit. Dabei stellt sich die Frage, ob die lokale Privatheit ihren Wert verliert und hier bereits von einer „Kolonialisierung“ der lokalen Privatheit gesprochen werden muss. Vor diesem Hintergrund soll ausgehend von feministischer Kritik liberaler Verständnisse lokaler Privatheit argumentiert werden, dass die These der strikten Trennung von Öffentlichkeit und Privatheit empirisch unzutreffend und normativ unangemessen ist. Davon ausgehend können Legitimitätsbedingungen öffentlichen Eingreifens in die lokale Privatheit entwickelt und die pandemiebedingten Maßnahmen hinsichtlich ihrer Legitimität überprüft werden. Dabei wird argumentiert, dass sich hierbei zwar nur eingeschränkt von einer Kolonialisierung sprechen lässt, sich die Wahrnehmung der lokalen Privatheit im Zuge der Ausgangs- und Kontaktbeschränkungen jedoch zu Lasten ihres Wertes verändert hat. (shrink)