A good life with dementia

Ethnographic articulations of everyday life and care in Dutch nursing homes

My PhD thesis is an ethnography on dementia care practices in Dutch nursing homes. Writing against the idea that life can only be good if dementia is eradicated, I articulate how a good life with dementia may come about through care, albeit temporarily. Through an exploration of dance, bathing, and everyday care practices such as getting up, showering and eating, I highlight how becoming sensitive to and working with residents' appreciations are central to bringing about what I call 'interesting subject positions' for residents: positions in which residents can become appreciating subjects.  

 

Academic publications

Driessen, A. and R. Ibañez-Martin (2019). “Attending to Difference: Enacting Individuals in Food Provision for Residents with Dementia.” Sociology of Health and Illness 42 (2), 247-261. doi: 10.1111/1467-9566.13004

In the face of warnings about total institutions and growing concern about the quality of care, healthcare professionals in Western Europe and North America have increasingly been exhorted to tailor their services to individuals in their care. In this article, we invite our readers to become more interested in the kinds of differences care is being tailored to, and with what effects. Focusing on food provision for residents with dementia, we present three repertoires through which care workers attend to, and enact different sets of differences between individuals: providing choice allows residents to express fleeting preferences; knowing residents places emphasis on the care providers’ familiarity with a person; and catering to identities brings to the fore the tastes which make up part of who someone is. The analysis brings attending to difference to the fore as a practical process and suggests that tailoring care requires sensitivity to the different kinds of individuals that may be enacted when attending to difference.

Driessen, A (2019) “On Building-user interactions: an ethnographic inquiry of positions for residents living in dementia care homes.” Medical Anthropology. 2019: 1-14. doi 10.1080/01459740.2019.1589464

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.

Driessen, A. (2018) “Pleasure and Dementia: On becoming an appreciating subject.” Cambridge Journal of Anthropology 36 (1): 23–39. https://doi.org/10.3167/cja.2018.360103

What can pleasure in the nursing home teach us about dementia and subjectivity? In this article I seek to challenge the assumption that the ‘fourth age’ involves the loss of subjectivity. In presenting dementia as a single pathway towards loss and decline, alternative pathways that provide more hopeful imaginaries become obscured. Drawing on ethnographic fieldwork in residential dementia care, I show how care professionals craft conditions that invite residents to take pleasure in, for example, dancing and bathing, and thus to become what I call ‘appreciating subjects’. Although residents do not craft these conditions themselves, they are active in accepting the invitations offered and enacting their appreciations. I argue that pleasure is a relational achievement, one that is contagious for those who let themselves be affected.

Driessen, A. (2017) “Sociomaterial Will-Work: Aligning Daily Wanting in Dutch Dementia Care.” In: Care in Healthcare: Reflections on Theory and Practice, Boldt, J. and Krause, F. (eds), London: Palgrave Macmillan. Pp. 111-133

Legal and philosophical accounts of ‘the will’ seem insufficient when thinking about what residents of nursing homes dementia want, and how situations in which a resident wants something else than his or her care worker should be dealt with. In this chapter, I offer an alternative understanding of the will—namely as ‘done’ in sociomaterial interaction, in which it can be aligned by making it relational. Instead of dismissing ‘daily wanting’ of those living with dementia, my analysis enables thinking about it. Based on an ethnography of daily care situations in physical care provision in Dutch nursing homes for people with dementia, I propose the concept of ‘sociomaterial will-work’ to highlight how daily wanting is worked upon in the context of unfolding sociomaterial interaction. I describe ways in which care workers’ and residents’ attempt to align the other’s wanting with their own as a form of labour and as dependent on sociomaterial relations, namely by (1) sculpting moods and emotions, (2) managing attention and (3) creative negotiation involving time and materialities. I argue that we may learn something about good care from taking a closer look at these practices: in doing sociomaterial will-work care workers strive for a positive way of relating, seeking alternatives to nothing for neglecting the resident or exerting force. Indeed, sociomaterial will-work may sometimes fail, but, as is key to doing good care, even so, it keeps on trying.

 

Publications for a non-academic audience

  1. Driessen, A. (2020). "Goed leven met dementie: Vier lessen uit de verpleeghuiszorg." Denkbeeld, 8-11

  2. Vermeulen, L., Driessen, A., Lemos Dekker, Natashe; Hoppe, S., Van der Buuse, S., Krause, K., The, A., and Pols, J. (2017). “Goed leven met dementie. Hoe doen we dat?.” In Goed Leven Met Dementie: Dialoog Tussen Wetenschap En Praktijk. The, A., Pool, R. and Pols, J. (eds). Amsterdam: Ben Sajetcentrum & Universiteit van Amsterdam. pp. 14-19.

  3. Driessen, A. (2017). “Goed Leven Met Dementie: Over Mogelijk Zijn en Mogelijk Gemaakt Worden.” In Goed Leven Met Dementie: Dialoog Tussen Wetenschap En Praktijk. The, A., Pool, R. and Pols, J. (eds). Amsterdam: Ben Sajetcentrum & Universiteit van Amsterdam. pp. 35–39.

  4. Driessen, A., Vermeulen, L., Hoppe, S., Lemos Dekker, N., Van der Buuse, S. and Smit, M. (2015). “Meer Oog Voor Zorg: Ambiguïteiten En Kwetsbaarheden in de Participatie in Zorg Voor Mensen Met Dementie.” Podium Voor Bioethiek 22 (2): pp. 14–16.

  5. Driessen, A. (2015). “Dementie, Diagnose En Het Lichaam.” In Nieuwe Kijk Op de Praktijk: Wisselwerking Tussen Wetenschao En Praktijk Leidt Tot Een Verfrissende Aanpak van de Long-Term Care, edited by Damen, E., Duyvendak, J.W., Hokken, R. and The, A. Amsterdam: Cordaan & Universiteit van Amsterdam. pp. 49–53

 

Invited presentations

‘Researching Appreciations: Articulating interesting subject positions for people with dementia.’ At Arts of Caring, Arts of Knowing: Dementia and Knowledge Practices. University of Copenhagen, Denmark. 19-20 September 2019

‘Working with anthropological data with lay carers and professional care workers: examples from the Long-Term Care and Dementia Project’ At symposium: ‘Connecting Data for Research: Good practices for  data integration and reuse’, VU University, Amsterdam, The Netherlands. 19 October 2015.

 

Conference presentations

  1. “Enjoyment and dementia: challenging taken for granted incompatibilities”, American Anthropological Association (AAA) Annual meeting, Minneapolis 16-20 November 2016

  2. “(De)mobilising architectural elements to ‘make care hold’: examples from psychiatry care and dementia care”, European Association for the Study of Science and Technology (EASST), Barcelona, 31 August – 3 September 2016

  3. “Moving Policy: Caring for physical activity in dementia care”. EASST, Barcelona, 31 August – 3 September 2016

  4. “Thought for food: exploring care practices involving food and drink beyond nutrition in Dutch dementia care.” Co-authored with Rebeca Ibañez Martin, PhD), 4S, Denver, 11-14 November 2015

  5. “Encounters between closed wards and residents with cognitive impairment: dementia in construction.” Materialities of care: encountering health and illness through objects, artefacts, and architecture, York, 16-17 September 2015

  6. “To care, to want and not to want: an exploration of work on ‚wanting‘ in dementia care in the Netherlands”, Summer school Caring about Care. The Concept of Care in Health Care. Freiburg, 7-9 September 2015

 

Public engagement activities

  1. Lecture at UNO-UMCG [University Medical Centre Groningen] training day for practitioners in elder care: ‘From refusal to wanting: On coming to a shared desire’ at ‘Oost-West, Thuis best?’, 6 December 2017

  2. Workshop at ABC-training day for psychologists working in elderly care. ‘Towards better understanding ‘poorly understood behaviour’, 13 October 2017

  3. Workshop in the Dialogue evenings series 'Tensions in life and work with dementia'. With Kristine Krause. 16 March 2017

  4. Interactive workshop at Symposium ‘Goed leven met dementie: hoe doen we dat?’ [Living well with dementia, how do we do that?], End of The Long Term Care Research Project, Symposium for formal and informal caregivers and people living with dementia. 23-24 June 2017

  5. Workshop in the Dialogue evenings series 'Picturing dementia'. With Laura Vermeulen and Els Roding. 29 January 2017

  6. Workshop in the Dialogue evenings series 'Daily wanting in dementia care'. 29 September 2016.

  7. Workshop in the Dialogue evenings series 'Searching, making and maintaining contact when living with dementia'. With Laura Vermeulen. 1 October 2015

  8. Interactive workshop for care professionals. ‘Movement as search for connection: on different forms of movement in dementia care settings’. With Laura Vermeulen. 21 September 2015

 

News & Media

13 December 2019. “Het goede leven met dementie.” Spui magazine, Universiteit van Amsterdam. 51:21

19 June 2019. “Het goede leven met dementie.” Persbericht Universiteit van Amsterdam.

19 July 2017. “Aanbevelingen van Zes Promovendi: Vraag een dementerende niet wie u bent.” De Volkskrant