Dementia Matters: User-Building Interactions Shaping Institutional Life in the Netherlands

ABSTRACT

In this article, I examine building-user interactions on three dementia wards in the Netherlands. I coin the concept of “sociomaterial awareness” to articulate a collective situational sensitivity to the ways in which the built environment invites its users (professionals, but also people with dementia themselves) to act in specific ways, as well as to possibilities to adjust (elements of) the building. I argue that along with different enactments of dementia, different positions become available for residents when the built environment is acknowledged as actively shaping care interactions.

KEYWORDS:

• The Netherlands
• built environment
• care
• dementia
• institutions
• modes of ordering

Acknowledgments

The research was preapproved by the Ethical Committee of the Amsterdam Institute of Social Science Research at the University of Amsterdam, the Netherlands. I would like to thank in particular the residents and care professionals with whom I worked over the years, for sharing their time with me, and for teaching me so much. I am grateful to Ariane d’Hoop, Annekatrin Skeide, Rebecca Lynch and two anonymous reviewers for their feedback on earlier versions of this article. I want to thank Jeannette Pols and Kristine Krause whose inspiration and support were crucial for my research and the writing of this article.

Notes

1. “Problem behavior” is now more commonly called “poorly understood behavior.” This change in terminology is an important move towards acknowledging that actions, although perceived as problematic, are likely to have a reason thus far not been recognized. This generates possibilities to pay attention and be curious. Here, I choose to avoid the word “behavior” altogether, as it still seems to pinpoint normatively the individual as the center of socially unacceptable conduct. In an attempt to describe what people do in a more neutral way, I use “activities” instead.

2. At night, most residents wore incontinence pads.

3. This should not be held in opposition to a biomedical approach to dementia. I build on work that argues against delineating biomedicine as the domain with the exclusive right to speak about bodies and diseases (cf. Mol 2002:11–22), or approaching it as one coherent body of knowledge (Berg and Mol 1998; Moser 2011). This work urges scholars to study biomedicine as only one site in which categories and realities are made in their many versions.

4. The Architectural Elements series by Rem Koolhaas in collaboration with the Harvard Graduate School of Design (2014), consists of 14 books, each dedicated to one architectural element which together make up the fundamentals of buildings: floors, walls, ceilings, roofs, doors, windows, facades, balconies, corridors, fireplaces, toilets, stairs, escalators, elevators and ramps. I thank Ariane d’Hoop for bringing this series to my attention.

5. In the material semiotic tradition, agency analytically does not require intentionality. Drawing on Latour’s “actors as entities” (1988) and Haraway’s “making a difference” (1988), Law and Mol state it as follows: “An entity counts if it makes a perceptible difference” (2008:58). Agency, then, is distributed between humans and non-humans, with each shaping, impinging on and mediating the capacity of other agents to act. A building here is not so much a conscious actor, but an actor nonetheless.

6. Nursing homes and participants were ascribed pseudonyms to ensure anonymity. I use first or last names according to how people were addressed in the situations described.

7. For a defense of the anthropological practice of letting oneself be surprised by one’s field, see Taylor (2014).

8. For budgetary reasons, care workers had arranged for second hand furniture to be available. Some of the couches were easy to get into, but hard to get up from. Residents had to be helped back up to be able to move back to the dining table. The example, even if it did not quite work out as planned in the beginning, highlights how care workers tinkered, as well as how even small details matter: even the kind of furniture matters for which kinds of activities are enabled and encouraged.

9. The importance of privacy has been frequently emphasized, and its lack in nursing homes has often been subject to critique (e.g. Bland 1999; Nord 2011a; Twigg 2000). A critique of locked doors of resident rooms, but also the closed-door policy pertaining to the ward exit and main entrance (see for instance Jennings 2001), was also voiced within De Parkhoeve. However, organizational change takes time; meanwhile residents could not access their rooms.

10. The reference is to Latour, who writes about hotel managers who attach a weight to keys so as to delegate to the object the task of reminding their guests to return them to the front desk (1988).

11. There is much to be gained here when cognition is acknowledged to be only one of the many capacities that allow us to recognize something. Inspiring examples explore tactility and muscle memory in relation to elements of the built environment. In her project “Keep on dwelling after all” (https://www.keepondwelling.com/), for example, Masha Soetekouw works with people with dementia who live in residential dementia care to create their own hand-made door handles. First using clay to find the right shape, then making a mold with silicone, Masha and each resident produce a plastic handle in colours of the resident’s choosing. The handle facilitates orientation on the ward through its appeal to tactile memories and the changed relationship that residents have with “their” door knob.

12. Following Zuiderent-Jerak I prefer to speak of “alterations” rather than solutions. The term alterations, he suggests, creates a sensitivity for new issues that arise in the wake of the intervention (2010:678–679).

Additional information

Funding

This research has been conducted within the Long-Term Care Partnership, financed by the Dutch Ministerie van Volksgezondheid, Welzijn en Sport (VWS) [Ministry of Health, Welfare and Sport], Gieskes Strijbis Fonds, care institution Cordaan and its academic fieldlab and learning centre Ben Sajetcentrum, and the University of Amsterdam, research priority area Global Health

Notes on contributors

Annelieke Driessen

Annelieke Driessen is a medical anthropologist. She conducted her PhD research at the University of Amsterdam on everyday life and care practices that enact interesting subject positions that allow life with dementia to be a good life. She is currently a Research Fellow at the London School of Hygiene & Tropical Medicine in the Forms of Care project, where she is conducting ethnographic research on “active non-interventions” in palliative care practices in the UK.