Can good dementia care and pretence go together?
Imagine a care home for people with dementia organised like a neighbourhood. Living units for six to seven people line real streets where the sun shines and a gentle breeze blows. And, yes, sometimes there’s a real downpour, just when residents are leaving the grocery store or the café to go home. There is a square with a fountain and some benches around it to meet up. There is a hairdresser, a restaurant, and there are several hubs for activities, such as the music society or the baking club. There is only one way out, and that door is guarded. But within the facility, people with dementia are free to move and live their lives as normally as possible. Caregivers help to organise the households and trained gardeners and shopkeepers support safety and well-being.
Experiments with so-called “dementia villages” are being carried out in The Netherlands, Switzerland and Canada. They are the pinnacle of compassionate care, some people say, a true alternative to more clinical settings. Others are critical. Remember the 1998 movie The Truman Show? What authenticity is there in a life that is silently directed behind the scenes, these critics ask, a life played out within invisible, but all too real, barriers?
Most care homes do not go to these extremes. But many innovative objects that are currently entering dementia care make use of make-believe. Think of baby dolls or social robots—such as the fluffy white seal Paro—that provide companionship to people with dementia by inviting feelings of care. Think of creatively camouflaged exit doors that look like bookshelves or landscapes, or of imitation bus stops. Intended to reduce distress for people that wish to leave the care home, they also pretend to be something other than what they actually are. Or how about film- and virtual reality installations that offer experiences of going for a walk in the forest or that display a star spangled sky for comfort during sleepless nights? The list is endless.
Innovations like these do have potential to support care work and to provide people with dementia with pleasurable experiences or meaningful activities. But they also contain dangers, such as the threat of trickery and soft manipulation.
This ethical dilemma is the focus of our research project Make-Believe Matters. The Moral Role Things Play in Dementia Care, funded by the Netherlands Organisation for Health Research and Development. We, Ruud Hendriks and Ike Kamphof, researchers from the Faculty of Arts and Culture of Maastricht University (the Netherlands), are currently doing fieldwork in care homes to study a wide range of objects that have aspects of make-believe. We observe how these objects are used and experienced by people with dementia and caregivers. And we interview healthcare professionals and designers about their views and their dilemmas in using objects like these.
Trickery and potential deceit are serious ethical issues. Where person centred care aims to sustain the personhood of people with dementia as unique individuals, deceiving people threatens their dignity. It constrains their freedom of choice by supplying them with false information, and it may somehow make what people experience less true or authentic.
Yet, make-believe in dementia care is also a complex issue. Surely, not all pretending is wrong. Having fun together can involve make-believe, as well as some forms of non-overt support. Even more difficult is the fact that many people with dementia, at times, experience different personal realities than the actual reality shared with those around them. Respecting and sharing these experiences with them may actually demand some form of pretending or role playing from caregivers and family. Isn’t that precisely what dementia villages and many objects of make-believe also do?
During our recent visit with researchers at the Dementia Services Development Centre we had a lively debate about these thorny issues. Should we avoid simulation and always look for real alternatives? When are experiences offered by objects, and created by designers and caregivers, truly supportive of people with dementia? And when are they providing pseudo-experiences? How about camouflaging an exit door by a poster that makes it look like bookshelves, or outfitting a cosy corner with baby dolls in cribs with the soft murmur of babies? These objects seem to be making false promises.
We also asked ourselves about the role of users. What could good use of objects with aspects of make-believe look like? Does it require special skills? Like a caregiver told us: “You don’t lie and say the doll is a baby, but you should hold it like one. And you don’t throw it in the corner afterwards.”
Most certainly, one size does not fit all people and all situations. Every person with dementia is different and every care situation has its own demands.
If you are a caregiver, family member, or a person with dementia, you may have your own views and experiences. We would love to welcome you into the discussion and to hear from you by comments to this post.
Find out more about this research at our international masterclass on 1st June where Dr Ike Kamphoff will be presenting.
Ike Kamphof is Assistant Professor in the Department of Philosophy at Maastricht University.
Ruud Hendriks works in the Department of Philosophy in the Faculty of Arts and Social Sciences at Maastricht University.