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A good life with dementiaEthnographic articulations of everyday life and care in Dutch nursing homesDriessen, A.-E.

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Citation for published version (APA):Driessen, A-E. (2019). A good life with dementia: Ethnographic articulations of everyday life and care in Dutchnursing homes.

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list of publications

Academic publicationsDriessen, Annelieke. 2019. “Dementia Matters: User-Building Interactions Shaping

Institutional Life in the Netherlands.” Medical Anthropology. https://doi.org/10.1080/01459740.2019.1589464

Bisaillon, Laura, Alana Cattapan, Annelieke Driessen, Esther van Duin, Lorena Anton, Shannon Spruit and Nancy Jecker. 2019. “Doing Academia Differently: ‘Needing Self-help Less than a Fair Society.’” Accepted for Publication in Feminist Studies. Co-authored, third author.

Driessen, Annelieke, and Rebeca Ibañez-Martin. 2019. “Attending to Difference: Enacting Individuals in Food Provision for Residents with Dementia.” Under review/Revised and resubmitted. Co-authored, first author.

Hoppe, Silke, Laura Vermeulen, Annelieke Driessen, Els Roding, Marije de Groot, and Kristine Krause. 2019. “Learning in Collaborative Moments: Practicing Relating Differently in Dialogue Meetings.” Under Review. Co-authored, third author.

Driessen, Annelieke. 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.

Driessen, Annelieke. 2017. “Sociomaterial Will-Work: Aligning Daily Wanting in Dutch Dementia Care.” In Care in Healthcare: Reflections on Theory and Practice, edited by Joachim Boldt and Franziska Krause, 111–33. London: Palgrave Macmillan.

Boldt, Joachim, Annelieke Driessen, Björn Freter, Tobias Haeusermann, Franziska Krause, Pei-Yi Liu, Tim Opgenhaffen, and Annekatrin Skeide. 2017. “Conclusion: Asking the Right Questions.” In Care in Healthcare: Reflections on Theory and Practice, edited by Joachim Boldt and Franziska Krause, 283-291. London: Palgrave Macmillan. https://doi.org/10.1007/978-3-319-61291-1_14. Co-authored, second author.

Driessen, Annelieke, Ilse van der Klift, and Kristine Krause. 2017. “Freedom in Dementia Care? On Becoming Better Bound to the Nursing Home.” Etnofoor 29 (1): 29–41. Co-authored, first author. Fieldwork conducted by Ilse van der Klift.

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Other publicationsKrause, Kristine, Jeannette Pols, Annelieke Driessen, and Emily Yates-Doerr. 2018.

“Thinking with Dementia.” Somatosphere. http://somatosphere.net/thinking-with-dementia. Co-edited.

Driessen, Annelieke. 2018. “Thinking Pain.” In Thinking With Dementia, edited by Kristine Krause, Jeannette Pols, Annelieke Driessen, and Emily Yates-Doerr. Somatosphere. http://somatosphere.net/2018/10/thinking-pain.html.

Amsterdam Care Collective. 2018. “Dementia and the Good Life: Collaborations with the Field.” Medicine Anthropology Theory. http://www.medanthrotheory.org/read/10021/dementia-and-the-good-life. Co-authored.

Vermeulen, Laura, Annelieke Driessen, Natashe Lemos Dekker, Els Roding, Silke Hoppe, Susanne van den Buuse, Kristine Krause, Anne-Mei The, and Jeannette Pols. 2017. “Goed Leven Met Dementie. Hoe Doen We Dat?” In Goed Leven Met Dementie: Dialoog Tussen Wetenschap en Praktijk, edited by Anne-Mei The, Jeannette Pols, and Robert Pool, 14–19. Amsterdam: Ben Sajet Centrum en Universiteit van Amsterdam. Co-authored, second author.

Driessen, Annelieke. 2017. “Goed Leven Met Dementie: Over Mogelijk Zijn En Mogelijk Gemaakt Worden.” In Goed Leven Met Dementie: Dialoog Tussen Wetenschap en Praktijk, edited by Anne-Mei The, Robert Pool, and Jeannette Pols, 35–39. Amsterdam: Ben Sajet Centrum & Universiteit van Amsterdam.

Krause, Kristine, and Annelieke Driessen. 2017. “Soep Doet Goed! Werkplaatsen Om Samen Te Denken, Te Spreken… En Te Eten.” In Goed Leven Met Dementie: Dialoog Tussen Wetenschap en Praktijk, edited by Anne-Mei The, Robert Pool, and Jeannette Pols, 85-89. Amsterdam: Ben Sajet Centrum & Universiteit van Amsterdam. Co-authored, second author.

Driessen, Annelieke. 2016. “Translating Dementia.” Slam That #Ethnography! Breaking Boundaries. http://allegralaboratory.net/slam-that-ethnography-breaking-boundaries/.

Driessen, Annelieke, Laura Vermeulen, Silke Hoppe, Natashe Lemos Dekker, Susanne van den Buuse, and Mark Smit. 2015. “Meer Oog Voor Zorg: Ambiguïteiten En Kwetsbaarheden in de Participatie in Zorg Voor Mensen Met Dementie.” Podium Voor Bioethiek 22 (2): 14-16. Co-authored, first author.

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summary

The most common story about dementia in the Netherlands is that of suf-ferers sailing off into darkness, disappearing over a horizon beyond com-munication and expression; they are lost to us before they have actually died. In this ‘fourth age imaginary’ the diagnosis of dementia is equated to the loss of what makes us human subjects: the ability to remember, to reason, to recognise others, and to express our preferences. In the absence of cure or effective prevention, the expectation is that 620,000 people will be living with dementia in the Netherlands (in a population of a little over 18 million), and more than 150 million worldwide by 2050. It therefore becomes important to ask: How can we care for so many people who will be diagnosed with dementia in the near future?

This thesis contributes to the urgent project of creating imaginaries that include people with dementia as subjects, and seeks to inspire prac-tices that allow for life with dementia to be a good life. For my enquiry into what constitutes ‘a good life’, I let myself be guided by what people with dementia themselves valued in the care practices I studied. In taking this approach, I am not trying to explain away ‘the problem’ of dementia, but to suggest more ‘interesting’ ways of relating to people with dementia, as compared to the fourth age imaginary.

To guide my enquiry, I asked:

1. How is life with dementia ordered in practices of everyday life and care in Dutch residential care?

2. What kinds of interesting subject positions for people with demen-tia are opened up through these practices?

3. How can the lives of people with dementia be learned from, and cared for, both in research and care settings?

In Chapter 1 I introduce my approach and relate it to the wider litera-ture on the topic. 2014 and 2015 I conducted in-depth ethnographic field-work on three residential care wards for people living with dementia in the Netherlands. I conducted interviews with managers, care workers and family members. Over this period I spent a lot of time on the ward both with residents and those caring for them. Daily care activities such as getting up, toileting, washing, dressing and eating, have commonly been

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regarded as ‘basic care’, and thus as a mere prerequisite for other, more meaningful activities to happen. Here, I take them as my field of enquiry to learn about possibilities for a good life with dementia. In practices of daily care, the focus is not on cognitive functioning but rather on care for the body. Analysing these practices allows me to make space for alterna-tive notions of subjectivity not based solely on cognition.

In my analysis, I draw on both medical anthropology and material semiotics to study the different ways in which life with dementia takes shape in everyday life and care in Dutch residential care settings. This means I study people and things in relation. I show different ways in which relations may be arranged, or ‘ordered’. I take a particular interest in the subject positions that emerge within different arrangements – some more ‘interesting’ than others. With the notion of subject position, I refer to the characteristics, possibilities and restrictions of what the person with dementia can do and experience. These positions can be ‘interesting sub-ject positions’ when they make space for what people with dementia can be observed to value and enjoy, offering counter positions to those pro-jected by the fourth age imaginary. In writing about practices in which residents could be observed to appreciate or enjoy something, my aim is to provide empirically grounded lessons that can be useful to both caregiv-ers and scholars. The hope would be that these lessons, in turn, inspire care and research practices that may contribute to good ways of living with dementia.

In Chapter 2 I analyse what care professionals talked about as ‘prob-lematic situations’ on the ward. This commonly referred to residents being inactive, restless, disorientated in time and space, or aggressive. I show that there are different ways of staging these states and actions. One way is to stage them as the consequences or symptoms of neurological pathology. However, this approach conceals the arrangements that contribute to their occurrence. Another is to enact them as effects of user-building interac-tions. I suggest the term sociomaterial awareness to articulate a sensitiv-ity to these user-building interactions. It is important for care workers to consider the ways in which the built environment invites its users to act in ‘problematic’ ways. They may then make small adjustments to the built environment that allow for more constructive activities, and other ways of living on the ward. For example: reorganising furniture may decrease passivity. Providing keys can stop restless waiting in front of a door, as well as repeated questions about access. No longer locking toilet doors changes incontinence from being an inevitable part of dementia to something that can be staved off. The analysis highlights the relations between buildings,

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residents, and caregivers that shape daily life with dementia. These rela-tions may be re-ordered in ways that make it possible for residents to live better lives on the ward.

In Chapter 3, continuing this thinking-people-and-things-in-relation, I ask how we may think about wanting, an expression of subjectivity, in everyday care encounters. Philosophical and legal accounts of the will as free or determined, and people as competent or incompetent, suggest that the will of people with dementia can simply be overruled. But how to think about what people want on a daily basis on the ward? I develop a conceptualisation of will not as something one has, but as something one does in relation to others, mediated by things. I propose the term socioma-terial will-work to describe practices in which residents and care workers attempt to balance the precarious oppositions in what each of them wants in daily care interactions. This relational work depends on creative nego-tiation, with strategic uses of time and materialities – such as a footbath to make a shower more appealing. This is not to say that will-work always succeeds: clearly, sometimes nothing works. However, the care work con-tinues even when will-work fails, and this requires ongoing reflection as to what activities are worth pursuing. I argue that it is precisely through these efforts that good care begins to take shape. Through joint and care-full will-work, people with dementia stand to gain a subject position that leaves space for what they want.

Chapter 4, co-authored with Rebeca Ibañez-Martin, highlights anoth-er aspect of interesting subject positions for people with dementia: indi-vidual differences. While tailoring care services to individuals has become an imperative in recent decades, this chapter explores how differences are attended to in food provision practices. What notions of individuality take shape here, and what does this imply for people living on the ward? We propose three repertoires for attending to difference: the first reper-toire, providing choice, entails the choice between two sets of meals every evening, what to have in one’s sandwich, or how to eat one’s pancake. It allows residents to express fleeting preferences that may differ from one day to the next, and change in the face of varying levels of ability to take food in without the help of a care worker; the second repertoire, knowing residents, places emphasis on continuity and the care providers’ familiarity with a resident over time, or with the preferences of their generation; in the third repertoire, catering to identities, eating habits that residents pre-viously had are continued, but they might equally clash with what newly acquired habits, such as when a formerly vegetarian resident developed a passion for meatballs. The suggested repertoires are not meant as an

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exhaustive list, and they may be mixed in a single instance of food pro-vision: getting to know someone may happen through providing choices over a longer period of time; or somebody may be known for wanting to choose. The analysis shows that institutions enact, or stage, certain kinds of individuals, while foreclosing the enactment of others. Furthermore, it shows that attending to difference is not straightforward. It is work that is both relational and performative: how differences are attended to matters for what individuals come to be.

What different people like, and come to enjoy, is further developed in Chapter 5. A life with dementia is commonly thought of as being devoid of pleasure. The analysis brings to light how care workers craft conditions for pleasure: they arrange a dance afternoon, prepare a luxurious bath, use lights, food and touch, and invite residents to appreciate these. Although residents do not craft these conditions themselves, my analysis demon-strates that they are active in bringing the occurrence of pleasure about: while crafting conditions affords pleasure, it cannot guarantee it. A care professional may draw a bath, but if a resident is not receptive to it, she cannot enjoy it. Care may involve helping residents to make themselves available to the conditions offered: in dancing together, one may provide stability to those whose legs have become tired; playing a resident’s favou-rite music may elevate their mood just enough to encourage them to dance out of bed. Only when accepting and valuing the invitations care workers extend can residents become what I call ‘appreciating subjects’. Becoming an appreciating subject is hence a relational achievement. It is the effect of conditions crafted, and of invitations made and accepted. What is more, pleasure is contagious, if only others give themselves over to it as well.

In Chapter 6 I advance radical relationality as a methodological approach, analytical strategy, and a key finding of this research. Radical relationality asks how phenomena come about as an effect of relations.

Methodologically, radical relationality brings certain responsibilities for the researcher. As research is not separate from attempts to improve the daily life of people with dementia, researchers must become attentive to their own role in the production of specific realities. One way to do this is to create opportunities for collaborative moments of learning, in which one joins informants in their reflections. Here, concerns can become shared. Another way is to rely less on language to gain a sense of what is important to our interlocutors, and to instead become sensitive to the enacted appreciations that one can observe in care interactions.

Analytically, my approach extends the importance of relations, con-sidering not only relations between humans, but also relations between

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humans and things: that is, to buildings, books, footbaths, and vegetar-ian meatballs. These are all part of what may make it possible for life with dementia to still be a good life. It furthermore shows how thinking of cen-tral aspects of subjectivity – such as the will, preferences, identities and pleasure – as radically relational, shifts the understanding of subjectivity from being centred around speech and language, to interdependence with the sociomaterial.

Finally, following on from this analysis, my thesis shows people with dementia – although it suggests that this is true for everybody – as radi-cally relational subjects. Over the course of this dissertation, it becomes clear how certain care practices can open up interesting subject positions for people with dementia: through sociomaterial awareness, individual residents gain positions that acknowledge what they do as understand-able, legitimate, and pleasurable or not, rather than explaining it away as a symptom of the pathology. Through the work of aligning each other’s desires in daily care interactions, residents can become – and be taken seriously as – desiring subjects. Through attending to choice, habits and preferences, individuals may be enacted as different or the same in rela-tion to others, and, crucially, to themselves in the past and present. Indeed, when conditions for pleasure are crafted, and invitations to enjoy these are extended and accepted, people with dementia – and those around them – can become appreciating subjects.

My research aims to strengthen care practices in which such interest-ing subject positions are achieved. I hope these positions will feed into new imaginaries of life with dementia, within and outside residential care, to support the realisation of a good life for those living with dementia, and for those that surround them.

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samenvatting

De diagnose dementie roept voor velen een beeld op van mensen die ver-dwijnen in een mist van vergeetachtigheid, achter een horizon waar com-municatie en expressie niet meer mogelijk zijn. Mensen die om mensen met dementie heen staan, zo wordt wel gesteld, raken hen kwijt nog vóórdat ze overleden zijn. Dementie wordt zo gelijkgesteld aan het verlies van wat ons tot mens maakt: de vaardigheid herinneringen te hebben, anderen te herkennen en verstandige keuzes te maken. Omdat er geen geneesmiddel is tegen dementie of voor effectieve preventie daarvan, is de verwach ting dat er in 2050 in Nederland 620.000 mensen met dementie zullen zijn, en meer dan 150 miljoen mensen wereldwijd. Deze mensen hebben zorg nodig, en zullen in de toekomst ook langer zorg nodig hebben dan tot op heden het geval was, omdat mensen steeds ouder worden. De dringende vraag is: Hoe kunnen we zorg dragen voor al deze mensen, nu en in de nabije toekomst?

Doel van mijn proefschrift is om bij te dragen aan het vormen van meer-kleurige beelden van mensen met dementie. Ik wil mensen met dementie laten zien als personen die een betekenisvol leven kunnen leiden, als subject, en niet enkel als een speelbal van hun ziekte. Ik laat me in mijn onderzoek leiden door wat van waarde is voor mensen met dementie in de zorginter-acties die ik heb geobserveerd. Ik hoop daarmee zorgpraktijken te inspireren die een leven met dementie een goed leven trachten te laten zijn. Met deze aanpak probeer ik het ‘probleem’ dementie niet weg te verklaren, maar zoek ik naar andere manieren om mensen met dementie tegemoet te treden.

De onderzoeksvragen die dit proefschrift inspireren zijn als volgt:

1. Hoe krijgt het leven met dementie vorm in het dagelijks leven en in zorgpraktijken in de Nederlandse verzorgingshuis- en verpleeg-huiszorg?

2. Wat voor interessante manieren van leven met dementie kan ik zichtbaar maken in deze zorgpraktijken?

3. Hoe kunnen we leren van, en zorg dragen voor mensen met dementie, zowel in het onderzoek als in de zorgpraktijk?

In hoofdstuk 1 beschrijf ik hoe ik tot deze vragen kwam en hoe ik te werk ging. In 2014 en 2015 deed ik langdurig etnografisch onderzoek op demen-tie-afdelingen van drie verzorgings- en verpleeghuizen in Nederland. Ik

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gebruikte de methode die centraal staat in de antropologie – participe rende observatie, oftewel het langdurig observeren van, en meedoen in het dage-lijks leven van de mensen die je probeert te begrijpen. Ik liep mee en hield interviews met verzorgenden en familieleden. Ik bracht in deze periode ook veel tijd door met bewoners en met diegenen die hen verzorgden. Dage lijkse zorgactiviteiten, zoals opstaan, naar het toilet gaan, wassen, aankleden, eten, in beweging blijven en naar bed gaan worden gewoon-lijk gezien als ‘basiszorg’. Daarmee worden deze activiteiten gereduceerd tot een voorwaarde voor andere, méér betekenisvolle activiteiten. Maar in mijn proefschrift onderzoek ik juist die alledaagse zorg. Die staat niet los van het goede leven, of is er enkel een voorwaarde voor, maar is een belan-grijk deel van het goede leven op zichzelf.In dagelijkse zorgpraktijken ligt de nadruk niet op het cognitieve functioneren, maar op lichamelijke zorg. Het analyseren van interacties rond lichamelijke zorg stelt mij in staat om meer te leren over de mogelijkheden om leven met dementie goed te laten zijn, en om ruimte te maken voor alternatieve noties van subjectiviteit, die beginnen bij lichamelijke uitingen – en zelfs leiden tot plezier.

In mijn analyse gebruik ik inzichten uit de medische antropologie. Ik maak bovendien gebruik van de gevoeligheden van de materiële semiotiek. Van de materiële semiotiek gebruik ik de theoretische aandacht voor rela ties, en voor de rol die dingen spelen in het dagelijks leven met dementie. Dit betekent dat ik mensen en dingen onderzoek in relatie tot elkaar. Ik ben hierbij bij-zonder geïnteresseerd in ‘interessante’ manieren van leven met dementie. Ik noem manieren van leven ‘interessant’ als ze ruimte maken voor dingen die mensen met dementie kunnen waarderen en waar ze van genieten.

Door te schrijven over praktijken waarin zichtbaar wordt dat bewo ners bepaalde dingen waarderen, formuleer ik empirisch geïnformeerde lessen voor zorgmedewerkers en onderzoekers. Mijn hoop is dat deze lessen inspi-ratie bieden aan zorgverleners en onderzoeksers om bij te dragen aan manieren van goed leven met dementie.

In hoofdstuk 2 analyseer ik wat zorgmedewerkers ‘problematische situ-aties’ noemden op de afdeling. Hiermee doelden zij op momenten waarop bewoners inactief, rusteloos, boos, agressief of gedesoriënteerd waren. Er zijn verschillende manieren om deze problematische situaties te begrijpen. Eén manier is die situaties als symptomen van dementie te zien. Nadeel van deze beschrijving is dat ze geen aandacht geven aan de arrangementen die bijdragen aan het ontstaan van problematische situa ties. Daarmee is er ook weinig zicht op verandering. Wanneer we proble matische situaties analyseren als effecten van de interacties tussen gebouwen en hun gebrui-kers, wordt het mogelijk om de situatie te verbeteren. Ik introduceer de

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term sociomateriëel bewustzijn om de gevoeligheid voor de interacties tus-sen mensen en gebouwen aan te duiden. Als zorgmedewerkers zich bewust worden van de invloed die gebouwen en hun inrichting hebben op bewo ners, dan kunnen zij soms door kleine veranderingen in de materiële ruimte constructievere reacties en handelingen van bewoners mogelijk maken. Zo worden heel andere manieren van leven op de afdeling mogelijk. Een paar voorbeelden: het verzetten van meubels kon beweging uitlokken als bewo-ners door de nieuwe koffiehoek worden uitgenodigd zich van de tafel naar de bank te begeven. Toen een bewoner een sleutel kreeg van haar kamer-deur, kon dit wellicht een einde maken aan het rusteloze wachten voor een afgesloten deur, en het herhaaldelijk vragen naar binnen te mogen stoppen. Het niet-langer-afsluiten van WC-deuren bleek incontinentie te kunnen uit-stellen of zelfs voor kómen. De relaties tussen de materiële ruim te, bewoners en zorgverle ners zijn belangrijke bepalers van hoe het dage lijks leven met dementie een goed of minder goed leven kan zijn.

In hoofdstuk 3 ga ik verder met het observeren van mensen-en- dingen-in-relatie. Ik vraag in dit hoofdstuk hoe we kunnen nadenken over iets ‘wil-len’ in dagelijkse zorginteracties. Filosofische en juridische theorieën laten de wil zien als iets dat werkt of niet, en daardoor mensen competent of incom-petent maakt. De wil van mensen met dementie is in die context meestal een probleem. Maar in het dagelijks leven op de afdeling willen mensen van alles, en verzorgenden zien al die wensen niet onmiddellijk als fout of ongeldig. Integendeel, ze doen veel moeite om waar mogelijk wensen in te willigen, of mensen te verleiden iets te willen wat hen zelf ook een goed idee lijkt. Ik ontwikkel een begrip van de wil, niet als iets dat een mens heeft, maar als iets dat een mens doet, samen met anderen, en beïn vloed door dingen. Ik noem dit sociomateriëel werken aan willen. Bewoners en zorgmedewerkers probe-ren tegengestelde wensen bij elkaar te brengen. Dit werk bestaat uit creatieve onderhandelingen, met strategisch gebruik van tijd (zoals het verschuiven van een douche naar later in de ochtend) en dingen. Zo had een verzorgende bijvoorbeeld ontdekt dat een onwillige bewoner een douche veel aantrekkelij-ker vond nadat ze hem een warm voetenbadje had gegeven. Werken aan wil-len slaagt niet altijd: soms lukt gewoonweg niets. Maar de zorg gaat door, en dat vraagt om het voortdurend nadenken over welke activiteiten écht moeten en hoe dat dan te organiseren zonder alleen maar ‘nee!’ of ‘mee!’ te zeggen.

Hoofdstuk 4, geschreven met Rebeca Ibañez-Martin, gaat over verschil-len tussen mensen. Zorg op maat is een belangrijke waarde geworden. Hoe wordt er in de praktijk eigenlijk aandacht besteed aan verschillen, en hoe wordt er voor deze verschillen gezorgd? Dit hoofdstuk richt de blik op eten op de dementieafdeling. Wat voor soorten individu zien we tijdens het ont-

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bijt, lunch and diner? We stellen drie repertoires voor om aandacht te geven aan verschil: het eerste, keuzes aanbieden, gaat erom mensen te laten kiezen wat ze willen. Bijvoorbeeld de keuze tussen twee verschillende maaltijden ‘s avonds, de vraag welk broodbeleg te nemen, of hoe een pannenkoek te eten. Het stelt bewoners in staat om iedere dag hun voorkeur uit te spreken, en die voorkeur kan iedere dag anders zijn. Het tweede repertoire, bewoners kennen, legt nadruk op continuïteit en de bekendheid tussen bewoners en zorgver-leners. Het kan ook gaan om de bekendheid met voorkeuren van de gene-ra tie van de bewoners. In tegenstelling tot de veranderlijke keuzes, blijven voorkeuren juist gelijk. In het derde repertoire, identiteiten voeden, worden eetgewoonten die bewoners eerder hadden, ondersteund. Maar de smaak van bewoners kan ook veranderen, zoals toen een voormalig vegetarische bewoner een passie ontwikkelde voor gehaktballen. Individualiteit is hier zowel stabiel als veranderlijk, maar strekt zich uit over een langere periode.

De voorgestelde repertoires zijn niet bedoeld als een uitputtende lijst, en ze kunnen samenvallen in één bepaalde situatie: zo kunnen verzor-genden mensen leren kennen door ze over een lange tijd keuzes aan te bieden; of iemand kan erom bekend staan graag te kiezen – of juist niet. De analyse laat zien dat maatwerk, het aandacht geven aan verschillen-de individuen, niet zo makkelijk is als het lijkt. Of de nieuw-verworven passie voor gehaktballen dient te worden gevoed, is een vraag waarbij de omgeving weer een grote rol speelt. Krijgt de bewoner de gehaktbal – dan worden vooral de huidige smaken gehonoreerd. Krijgt zij geen gehaktbal, dan is haar identiteit als vegetariër gewaarborgd – een vurige wens van de familie. De manier waarop verzorgenden aandacht geven aan verschillen, bepaalt dus ook wat voor soort individuen de bewoners kunnen zijn.

Wat verschillende mensen waarderen en waar zij van genieten werk ik verder uit in hoofdstuk 5. Een leven met dementie wordt meestal niet in verband gebracht met plezier en genot. Mijn analyse laat zien hoe zorg-medewerkers mensen met dementie plezier proberen te laten ervaren: ze organiseren een dansmiddag, maken een luxe bad klaar, gebruiken licht, eten en aanraking, en nodigen bewoners uit om hiervan te genieten. Hoewel bewoners de mogelijkheden voor plezier niet zelf scheppen, zijn ze niet passief. Mijn analyse laat zien dat zij een actieve rol moeten spelen om plezier te laten ontstaan: ze moeten de uitnodiging aannemen. Zorg kan dan ook inhouden: bewoners ontvankelijk te maken voor de moge-lijkheden om te genieten; tijdens het dansen kan de een de ander met wan-kele benen houvast geven; het draaien van de favoriete muziek van een bewoner tijdens het ochtendritueel kan diegene net genoeg opbeuren om uit bed te komen. Genieten is dus weer iets wat mensen samen doen, met

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gebruik van de dingen om hen heen. Dan blijkt ook dat genieten besmet-telijk is: waar plezier is, voelen anderen zich ook uitgenodigd.

In hoofdstuk 6 breek ik een lans voor radicale relationaliteit als een methodologisch principe. Radicale relationaliteit betekent dat dingen, zoals een goed leven met dementie, tot stand komen in relaties tussen mensen en dingen. Methodologisch gezien brengt radicale relationaliteit verant-woordelijkheden voor de onderzoeker met zich mee. Omdat onderzoek niet los staat van de pogingen het dagelijks leven van mensen met dementie te verbeteren, moeten onderzoekers aandacht besteden aan hun rol in de manier waarop dat leven geleefd wordt. Eén manier waarop dit gedaan kan worden, is het creëren van mogelijkheden voor momenten van gezamenlijk leren, waarin de onderzoeker leert van de reflecties van verzorgenden. Hier kunnen individuele zorgen collectief gedeelde zorgen worden. Een tweede manier bestaat uit het proberen om van non-verbale uitingen te leren wat onze informanten belangrijk vinden, en gevoeliger te worden voor de de waarderingen die naar voren komen uit interacties in de zorg. Dit is een belangrijke manier om ook de bewoners in het onderzoek te betrekken.

Analytisch gezien bouwt mijn aanpak voort op het belang van relaties door ook relaties tussen mensen en dingen te onderzoeken: de onderzoe-ker moet oog hebben voor relaties met gebouwen, boeken, voetenbaden en vege tarische gehaktballen. Deze dingen zijn belangrijk om vorm te geven aan een goed leven met dementie. Mijn aanpak laat bovendien zien hoe dat wat een mens tot mens maakt – zoals de wil, voorkeuren, eigenheid en plezier – in een radicaal relationeel perspectief minder gaat over spraak en taal, maar over relaties tussen dingen en mensen, tussen lichamen en sensaties.

Mijn proefschrift laat mensen met dementie zien zoals ze altijd-in-relatie zijn. Verschillende zorgpraktijken maken verschillende manieren van leven mogelijk voor mensen met dementie: interessante en minder interessante. Door sociomateriëel bewustzijn wordt het mogelijk wat individuele bewoners doen, te zien als begrijpelijk en legitiem, en om rekening te houden met wat zij willen en waarderen. Dit lost niet alles op, maar maakt het mogelijk te hande-len in situaties die als problematisch worden ervaren omdat er ‘niets aan te doen is’. Door samen te werken aan willen in dagelijkse zorginteracties, kun-nen bewoners veranderen in ‘verlangende subjecten’ – mensen met wensen die serieus genomen kunnen worden. Door aandacht te besteden aan keuze, gewoonten en persoonlijke voorkeuren, krijgen verschillende individuen vorm, soms verschillend van anderen, en soms – en dat is belangrijk – anders dan zichzelf in het verleden. Als er voorwaarden zijn om te genieten, en als de bewoners die worden uitgenodigd zich hieraan over te geven die uitnodiging aan nemen, dan kan het leven met dementie daadwerkelijk plezierig zijn.

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Acknowledgements

There are many people who have been involved with, and have contrib-uted to this project in various ways. Writing a dissertation is radically rela-tional too! While I take responsibility for its faults and flaws, I am deeply grateful for to all those who helped this project to become what it is.

First of all, I owe many thanks to those who remain anonymous in this dissertation – the many residents, family members, volunteers and care professionals in the three field sites. I feel privileged to have been allowed to be part of their daily life and work, and I am thankful for the many things I have learnt. I thank the directors and managers of the care and nursing homes for granting me access to the locations. To the participants of the Dialoogavonden – in particular Paula Irik, Irene Kruijssen, Titia Daniels, Rikki Braas, Jeroen Wilhelmus, Annetje Bootsma, Fred Peters, Mart ‘van de Vegt’ and Eric van Neure – thank you for the many honest conversations, for jointly discovering ways of thinking collaboratively, and for teaching me more than we I could have hoped for.

I am thankful to the Gieskes Strijbis Fonds, Ministerie van Volks-gezond heid, Welzijn en Sport (VWS), care organisation Cordaan and the Ben Sajet Centrum, and the research priority area Global Health of the University of Amsterdam for funding this research. The University of Amsterdam, in particular the research priority area Global Health and Development, Cordaan and the Ben Sajet Centrum deserve an extra mention for the generous financial and practical support and collabora-tion that made the dialogue evenings and the Goed Leven met Dementie conference possible. I want to thank in particular: Eelco Damen, Jan Coolen, Roland Schmidt, Roeland Hokken, Leny van Dalen, Monique Spreitzer, Hannie van Schutterhoef, Remco de Vries, Wim Schoonhofen and Jenneke van Pijpen. Thank you for helping my colleagues and me to give shape to the relations between research and practice.

Before I started this PhD, I was warned: writing a dissertation can be a lonely endeavour. However, being lonely proved to be difficult in such a thriving scientific community as the one at the AISSR at the University of Amsterdam. I am grateful to Anne-Mei The and Robert Pool for the opportunity to do this research, and for bringing together such a wonder-ful team. I would like to thank Susanne van den Buuse for her talent to see the best in every situation, and for occasionally making anthropology

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strange to anthropologists; Silke Hoppe for teaching me to appreci-ate silences and other absences, and never to gloss over what is difficult; Natashe Lemos Dekker for sharpening my empirical and ethical sensitivi-ties through careful attention to detail; Laura Vermeulen, for adding depth to our conversations, in ever prosaic ways; Mark Smit, for calm and clarity. I also thank Els Roding, Marije de Groot, Antoinette Reerink, Hanneke van Wees, Rikke Komen, Sabya van Elswijk, Hugo van der Wedden and Zerline Henning, who have contributed to and supported our team activi-ties over the years. I am thankful to the Gieskes Strijbis Fonds, Ministerie van Volksgezondheid, Welzijn en Sport (VWS), care organisation Cordaan and Ben Sajet Centrum, and the research priority area Global Health of the University of Amsterdam for funding this research.

I am grateful to Annemarie Mol for welcoming me into the meet-ings and seminars of the ‘Eating Bodies team’ and fluid network, with Else Vogel, Filipo Bertoni, Rebeca Ibáñez Martín, Emily Yates-Doerr, Sebastian Abrahamsson, Cristóbal Bonelli, Anna Mann, new members Hasan Ashraf, Carolina Dominguez, Tjitske Holtrop, Justine Laurent, Oliver Human, Jeltsje Stobbe and Ulrike Scholtes, and visiting schol-ars Emil Holland, Wakana Suzuki, and Marianne de Laet. I enjoyed and learned a lot from our inspiring conversations about shared theoretical interests in ANT, STS, material semiotics, and the wondrous worlds that make up academia.

I could not have wished for better supervisors than Kristine and Jeannette. Kristine, what a welcome miracle that you should join our Dementia research team in the fall of 2013, and become my co-supervisor. I am forever grateful for your passion for anthropology (thank you for not letting me lose sight of it!) and teaching, your commitment and contribu-tions to my project, and your efforts to bring and keep people together. While these were all crucial for my project, they are also an inspiration to me. Jeannette, you became my supervisor a few months later, and I will always cherish the moment in which you decided to do so. Thank you for being a tower of strength. I am grateful for your clear life compass, for the cheerfulness that you brought to our meetings, and an insistence on what people themselves value to my analyses. Kristine and Jeannette, I will always cherish the moment when both realised that you would be super-vising together. Our conversations helped me to think yet further, and, even when they were challenging, were always insightful and inspiring. There is a good reason your PhDs call you ‘the dream team’!

Although not formally a team, the growing group of PhDs supervised by Kristine and Jeannette, grew into something that certainly felt like one.

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Annekatrin Skeide came first, by then already friend, at all times sharp minded and funny; then came Maja de Langen and Leonie Dronkert – thank you all for joining the academic sisterhood (while also critiquing the family metaphor in the university), for enriching the Anthropology of Care research network with your intellect and inspiring personalities, and for bringing so much gezelligheid! Ariane d’Hoop, I count you in, because you too feel like a close academic sister!

If fieldwork and writing was ever lonely, my friends and colleagues at the AISSR made sure this never lasted for long. I learned from them through walk-talks during the Walking Seminar, critical engagements with classical and new texts at the STS reading club, support and constructive feedback on work in progress in the Writing Care group, and enriching presentations and discussions in the AMC Philosophy of Care meetings. Within and outside of these meetings I met incredibly inspiring people, of whom I hope to stay in touch as our lives and careers develop in many different directions. I was lucky to have Lex Kuijper, Willemijn Krebbekx. Carola Tize, Stine Grinna, and Megan Raschig as office-soulmates, fellow-organisers of time within and away from academia and simply fantastic friends; Loes Aaldering, Davide Gnes, Annisa Triyanti as fellow PhD-weekend organisers; Carla Rodrigues, Hanna Henao Vanegas, Ines Faria, Hasan Ashraf, Nuria Rossel, Marten Boekelo and Laban Muzinguzi as sal-sa buddies and Francesco Colona, Mutsumi Karasaki, Nataliya Komarova, Carolina Frossard, Tracian Meikle and Ayşen Üstübici as cross-departmen-tal friends. I am grateful to have taught with David Bos, Mandy de Wilde, Danielle Chevalier, and Josien Arts, protested with Amade M’charek, Julie McBrien, Erella Grassiani, Anneke Beerkens, and Yoren Lausberg, studied STS texts with Swasti Mishra, Anastasiya Halauniova and Tait Mandler, and taken part in a reinvigorating workshop on writing ethnography alongside Tanja Ahlin, Josien de Klerk, Gavaza Maluleke, Carolyne Egesa, Sarita Fae, Lucy Mung’alam, Amisah Bakuri, David Bukusi Daktari, among others. Special thanks go to Oil Laocharoenwong, Retna Hanani, Prio Sambodho and Arnoud Zwemmer, with whom I have enjoyed so much laughter (and singing), and even a dinner on what would have otherwise been a lonely Christmas night. To the many more fantastic colleague and friends within the AISSR, AMC and beyond– Adnan Hossain, Anja Hiddinga, Annemarie van Hout, Annerienke Fioole, Arsenii Alenichev, Bregje de Kok, Carolina Frossard, Christien Muusse, Daniel Guinness, Diana Pakasi, Dina Zbeidy, Dorothea Dechau, Douglas Thompson, Gerben Moerman, Gideon Lasco, Hayley Murray, Ildikó Plajas, Jaafar Alloul, Judith Westeneng, Lieke Wissink, Lisanne Claessens, Lisette Jong, Maartje Hoogsteyns, Mark Hann,

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Mariana Rios, Marianne Fatiadou, Maarten van Westen, Milena Veenis, Minke Nouwens, Natasja Roels, Rachel Spronk, Roanne van Voorst, Roos Hopman, Ryanne Bleumink, Sonja Jerak-Zuiderent, Thijs Dooremalen, Tracian Meikle, Trudie Gerrits, Uroš Kovač, Victor Toom, Willy Sier, and those who I unintentionally failed to mention – THANK YOU for making UvA a warm and welcoming place!

And this was not all: I was fortunate to go to conferences and work-shops in and outside of the University of Amsterdam. Out of those I met I want to thank in particular: Gareth Thomas, Bernhard Weicht, Mike Poltorak, Ralf Jox, Janelle Taylor, Henri Snel, Patrick McKearney, Björn Freter, Tobias Haeusermann, Tim Opgenhaffen, Pei-Yi Liu, Franziska Krause, and Joachim Boldt. I am grateful to the Brocher foundation for the opportunity to write in Hermance, where I was fortunate to meet Laura Bisaillon, Ekedi Mpondo-Dika, Jaimie Morse, Nancy Jecker, Lorena Anton, Kristen Chaisson, Alana Cattapan, Mahlet Atakilt Woldetsadik, Zohar Lederman and Sahar Sadjadi. Thank you Shannon Spruit, Esther van Duin, and Sicco de Knecht – for sharing in that interdisciplinary adventure, and being such wonderful friends to me!

Many thanks go to Muriël Kiesel, Christina Garofalo and Janus Oomen for administrative support and puzzle solving. I am grateful to Erin Martineau, Maja de Lange, Daniel Guinness, Steve Russel, Takeo David Hymans and Max Youngman for careful language editing of various drafts of articles and chapters that make up this dissertation. Many thanks to Trees Waarlé, who did the design and layout for this thesis; I really enjoyed working with you to make it look as professional and personal as it does.

There are some people without whom I would have not even embarked on this PhD journey. I am indebted to Gerdien Steenbeek, my supervi-sor during my Bachelor’s degree, for making me fall in love with contem-porary and critical anthropology, to Christian Bröer, who supervised my Master’s thesis and agreed to stay my supervisor despite rather abrupt changes in research topic, for teaching me how to teach and how to bridge and merge sociology and anthropology, and to Marianne and Albert van der Kruis, for believing in me even before I started.

I was fortunate to become get a post-doc at the London School of Hygiene & Tropical Medicine, with people who made the completion of the journey so much easier. To my London colleagues Simon Cohn, Rebecca Lynch, Erica Borgstrom, Natassia Brennman, Hannah Cowan, Maddy Gupta-Wright, Lauren Redfern, Maayan Ashkenazi, Charlotte Kühlbrandt and Maddy Pearson: I am grateful to have be part of such an inspiring team-assemblage. I look forward to learning more from you.

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My friends provided welcome and crucial opportunities to leave the wondrous worlds that make up academia behind. I take this opportunity to thank Clara, Jolien, Imre, Jan-Jaap, Sophie, Basim, my fellow MORE! band members Charlotte and Manon, as well as Niels and Edwin, Sanne and Sanne, Hanna, Lyn and Lola. I cannot put into words how incredibly important your listening and part-outsider viewpoints were on university life, and how much I appreciate your friendship.

A special mention is for my family. Richard Driessen and Bettina Klein, my parents – thank you for teaching me curiosity, wilfulness and endurance; thank you for trusting that I could succeed at bringing this project to completion in such a way, that I, too, could believe it. Thank you, mam, for creating the artworks that make this academic text so beautiful and colourful. Inge, Rosalie, Doortje, Guusje and Eva, Bart, Feline, Berit, Bieke, and Leander, Hadar, Paul - thank you for extending and enriching our family. And I am so grateful to my sisters Floor, Louise and Emmeline for all their support. Whether we all live in Amsterdam, as we did at the start of this project, or, as we do now, in three different countries so far apart, I will always feel close to you.

A last word of thanks to my two paranymphs, Willemijn and Else, aka material semiotic girls: I am more than grateful for the tremendous sup-port you have been for me, and most of all, for our friendship that formed through the joint survival of fieldwork, writing and submission anxiety, downhill snow driving, conference panel organisation, and through the enjoyment of weekends away, emergency wine and office dances... You are fantastic!

The most common story about dementia is that of sufferers sailing off into darkness, disappearing over a horizon beyond communication and expression. In the absence of cure or effective prevention, the expectation is that 620,000 people will be living with dementia in the Netherlands (in a population of a little over 18 million), and more than 150 million worldwide by 2050. By ethnographically articulating interesting subject positions for people with dementia, this thesis tells stories of people with dementia as desiring, appreciating subjects. In doing so, this thesis seeks to contribute to the urgent project of creating new imaginaries, in order to inspire practices that allow for life with dementia to be a good life.