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Ethics, Aesthetics, and Design in Dementia Care
Dignity, Care Ethics, and Design in Dementia Residential Care Environments
Jodi Sturge & Elleke Landeweer
The architecture and design of residential care environments are critical in supporting the health outcomes of patients, residents, and staff. In residential care environments for people with dementia, interior designs are often put in place to restrict or distract residents, keeping them safe from harm. However, such measures can violate human rights and dignity and impact the well-being of residents. Based on a design ethnographic and care ethics approach, we will present our interdisciplinary reflections on how research participants interact with certain interior environment design features and how some design features appear not to engage nor support the dignity of all people living with dementia in care environments. We will discuss how design may not be in the context of modern-day society and can have unethical implications. Understanding how people with dementia interact can provide valuable insights into how design features can be more engaging and inclusive for all residents. This knowledge can inform future design decisions that promote safety and dignity to support the quality of life of people with dementia.
Jodi Sturge is a health geographer and design researcher living in the Netherlands. Jodi is an Assistant Professor in interaction design with the Department of Design, Production and Management in the Faculty of Engineering Technology at the University of Twente. Her mixed-method research focuses on mobility, human building interaction, and well-being to inform the design of healthcare facilities, home environments, and other social infrastructure. Jodi has experience with co-design, evidence-based design, and citizen science projects to improve public health, healthcare services, and community outcomes.
Elleke Landeweer is a philosopher and care ethics researcher, specialised in qualitative empirical ethical research methods with an interest in the field of long-term care. She recently started as an Associate Professor at the Care Ethics research group of the University of Humanistic Studies in Utrecht and is affiliated with the elderly care academic network Groningen (UNO-UMCG) as Senior Researcher. Research projects under her supervision address moral dynamics in nursing home care and moral stress among long-term care professionals.
Theatre, Ethics, and End-of-Life Care for People with Dementia
Janieke Bruin
In the Netherlands, increasing numbers of people with dementia, as well as increasing numbers of cases of euthanasia for people with dementia, raise many questions about the role of an advance directive and how to determine whether a person with dementia experiences suffering from the disease. Not only health care professionals, but also politicians and broader society reflect on these and other ethical questions around end-of-life care for people with dementia. An interactive theatre play about the 80-year old Dirk-Jan, who is in an advanced stage of dementia, raises many of these ethical questions. Therefore, the play might help the people in the audience in thinking about these complicated questions. However, we do not know if this is so, and if so: how this works.
In this research, we use Q-methodology (Watts & Stenner, 2005) to study how both health care professionals and other people think about end-of-life care for people with dementia, and if there are regional differences in this. Using TESS, the Test for Ethical Sensitivity in Science (Clarkeburn, 2002), we measure if, and how, the theatre play changes the ways people in the audience think about end-of-life care. Moreover, needs for knowledge and practical tools are mapped and used, together with the other results of this study, to improve existing guidelines on end-of-life care for people with dementia.
Preliminary results of a pilot study (n=206) show that the play not only strengthens people’s opinions about end of life care, but also that their ideas become more nuanced and diverse. People indicate that the play makes them (re)consider topics such as a meaningful life and dignity, and makes them more aware of the importance of the perspectives and emotions of all people involved in end-of-life care for people with dementia.
References
Clarkeburn, H. (2002). A test for ethical sensitivity in science. Journal of Moral Education, 31(4), 439-453. DOI:10.1080/0305724022000029662
Watts, S. & Stenner, P. (2005). Doing Q methodology: Theory, method and interpretation. Qualitative Research in Psychology, 2(1), 67–91. DOI: 10.1191/1478088705qp022oa
Janieke Bruin is a religious studies scholar working on different aspects of death. In previous studies, she worked on contemporary funeral rituals in the Netherlands, the role of funeral music in the shorter and longer period after the funeral, and the inclusivity of personalized funeral rituals. She currently is a postdoc researcher at the IQ Health science department, Radboud University Medical Center, Nijmegen, the Netherlands, studying ethical questions related to end-of-life care for people with dementia.
Into the Wide Open? Nature-Based Aesthetics in Dementia Care
Ruud Hendriks & Ike Kamphof
People living with dementia find themselves locked in psychologically (“turned inward”), physically/materially (home-bound or institutionalized), therapeutically (pharmaceutically and physically restrained), and socio-culturally (stigmatized; excluded). Person-centered care (Kitwood, 1997) aims to re-connect them with their socio-material environment. Much is expected here from nature-based interventions that literally take people outside, e.g. in therapeutic gardening or sensory walks (Bennett et al., 2022; Gilliard & Marshall, 2012), or that bring the “outside” inside, e.g. by interior decorations that mimic beautiful nature. As care-aesthetical assemblages these interventions (1) involve a multilayered, aesthetic tinkering with material and social elements, based on perceptions of the given situation as in need of “repair” (Tronto, 1993); and (2) aim at opening up the senses of people with dementia in order to (re-)connect with the world.
Nature-based care-aesthetics operates in a field of tension. On the one hand, it may serve as a form of compassionate deception or an-aesthetics: beautifying interiors by as-if natural scenes pasted over harsh institutional reality and the closed character of the psychogeriatric ward. On the other hand, critical dementia studies demand opportunities for people with dementia to reclaim imagination and escape from a merely soothing aesthetics in sensual play (Mirzoeff, 2014). Addressing this tension, we analyse three cases of nature-based aesthetic tinkering: interior decorating strategies; dementia village De Hogewyck; and hiking trips by the Brain Adventure Team.
Instead of evaluating these interventions according to existing criteria of truth and beauty, we would like to conceive these as artful forms of play or performance, involving various material and social actors and with varying possibilities. While these performances are rooted in history and existing power structures, we are especially interested in their potential for alternative relationalities (Ziarek, 2004), both socially and with and in nature.
References
Bennett et al. (2022). Me, myself, and nature: Living with dementia and connecting with the natural world – more than a breath of fresh air? A literature review. Dementia, 21(7), 2351–2376.
Gilliard, J. & Marshall, M. (2012). Transforming the quality of life for people with dementia through contact with the natural world: Fresh air on my face.
Jessica Kingsley Publishers.Kitwood, T. (1997). Dementia reconsidered: The person comes first. Open University Press.
Mirzoeff, N. (2014). Visualizing the Anthropocene. Public Culture, 26(2), 213-232.
Tronto, J. (1993). Moral boundaries: A political argument for an ethic of care. Routledge.
Ziarek, K. (2004). Introduction: The turn of the avant-garde. In The force of art (pp. 1-17). Stanford University Press.
Ruud Hendriks (Faculty of Arts and Social Sciences, Maastricht University, The Netherlands). Combining ethnographic work and philosophical reflection, my scholarly work focuses on arts- and technique-based interventions in mental health care, with a special interest in the role of imagination in dementia care practice and research. My publications include work on elder-clowning, normative aspects of technologies of make-believe in dementia care, and autism spectrum disorder. My current research (with Ike Kamphof) looks at imaginaries of nature in psychogeriatric care. ORCID: 0000-0002-4381-6689
Ike Kamphof (Faculty of Arts and Social Sciences, Maastricht University, The Netherlands). My academic work focuses on the aesthetics and ethics of (technologically mediated) networks of care, with a focus on dementia care and nature conservation. Methodologically, I make use of ethnographic and (post)phenomenological approaches. I published, among others, on forms of spectatorship, on the use of motion sensors in the care of frail old people, on normative aspects of technologies of make-believe in dementia care, and on social robotics. My current research (with Ruud Hendriks) investigates imaginaries of nature in care interventions.
Location
23-25 January 2025
Kontakt der Kontinenten, Amersfoortsestraat 20
3769 AS Soesterberg
Online
23-25 January 2025
Kontakt der Kontinenten, Amersfoortsestraat 20
3769 AS Soesterberg
Online
Contact info Louis van den Hengel
Images homepage: Merel Visse, Christine Leroy
design website: Johanne de Heus and Marielle Schuurman