Make-believe Matters. The Moral Role Things Play in Dementia Care

This project addresses the unexplored moral role of artefacts in dementia care, in particular with regard to deception. It will develop a tool for ethical decision making for caregivers and designers that incorporates the active and ambiguous role that things play in person-centred care. 1. Problem Dementia care can no longer do without material support. But the question of the proper place of these artefacts in dementia care is still unanswered. High- and low-tech interventions are used to improve the efficiency and quality of care and to support the well-being of people with dementia. But many of these things contain elements of make-believe that are potentially deceptive. Notable examples are social robots that provide companionship to people with dementia by feigning affection; electronic doors that invisibly manage their behaviour; and VR-devices that offer enriched but unreal experiences. Person-centred care, now largely the norm if not always fact, demands that care should sustain the personhood of people with dementia. Such positive person work includes strict views on potential deception and trickery. This compels to reconsider the unresolved debate on the acceptability of deception in dementia care by taking the activity of artefacts, high- and low-tech, into account. Do these artefacts deceive? When are they manipulative instead of quietly supporting? How do they transform care relationships as we know them and the values embedded in these? 2. Research question The main question guiding this project is: Under which conditions can practices with artefacts that involve make-believe be seen as supportive of personhood and when do they count as deceptive and as undermining personhood? 3. Approach Existing ethical approaches that focus on humans as autonomous moral actors are ill-equipped to deal with the subtle mediating role of artefacts in current dementia care. This project takes an alternative, practice-oriented approach to ethics. It maps out emerging moral intuitions and conflicts through fieldwork in selected care practices, supplemented by interviews and literature research. The results of fieldwork are analysed and evaluated with the help of three main fields of inquiry that are brought together in an innovative way: the philosophy of technological mediation, ethical theory on deception in dementia care, and concepts of person-centred care. Four groups of objects are studied in this project: objects that provide companionship (e.g. robots, companion dolls), protection (e.g. electronic doors, fake bus stops), enrichment (e.g. virtual reality environments), and recognition (e.g. personalized doors, nostalgic interiors). 4. Result The project will develop and pilot an educational tool for (apprentice) caregivers and designers. Making use of vignettes and questions, this tool facilitates ethical reflection and decision making that incorporates the role played by artefacts in morally charged care situations, in particular with regard to potential deception. Close cooperation of the project team with professionals in care- and design education and with expert centres on dementia and healthcare guarantees the practical usability of the tool as well as its further dissemination. 5. Relevance People with dementia are increasingly dependent on their social and material environment for care, orientation and retaining a sense of self. At the same time their disease makes them particularly susceptible to deception and a loss of trust in their social and material surroundings. Therefore good design and social support are crucial to dementia care. Caregivers and designers of artefacts operate on the frontline of a fast changing practice. Existing moral intuitions often no longer fit, new dilemma’s arise and threaten collaboration on the nursing home floor. In the face of the present influx of new artefacts into dementia care, this project aims to contribute to good care by supplementing existing ethical guidelines for care and design. It provides concrete support to ethical reflection and decision making with regard to potential deception for (apprentice) professionals in care and design. 6. Project team This project is embedded in the research of the Centre for Ethics and Politics of Emerging Technologies at the Faculty of Arts and Culture (Maastricht University). Members of the team have extensive experience with research in the ethics of healthcare and in dementia care in particular (cf. former ZonMw project 'Voorbij autonomie en taal. Naar een Disability Studies’ perspectief op dementie'). They participate in international research networks for ageing studies and for technology assessment. 7. Feasibility Cooperation with relevant partners in the fields of care, design and education has already been established in order to secure fieldwork locations, solicit concrete advice on the requirements for the educational tool, and establish sites for testing the tool.