Articulating Interesting Subject Positions for People with Dementia: On Hanging Out in Dutch Nursing Homes

ABSTRACT

In this article, drawing on ethnographic research on everyday life and care for people with dementia in Dutch residential care, I argue that researchers who work with people with dementia can contribute to the enactment of “interesting subject positions,” thereby enriching the ways in which life with the condition is understood. The crux, I propose, is to use “hanging out” as a method and to ask “interesting questions,” an approach that enables participants to let researchers know what matters to them. Researchers, in turn, are enabled to “say more” about dementia, and to bring to light interesting subject positions.

Dutch Abstract

Dit artikel baseert op etnografisch onderzoek naar dagelijks leven en zorg voor mensen met dementie in Nederlandse zorginstellingen. Ik beargumenteer dat onderzoekers kunnen bijdragen aan de totstandkoming van “interessante subject posities” en daarmee het begrip van het leven met dementie te verrijken. De crux, zo betoog ik, is het gebruik van “hanging out” als methode, en het stellen van “interessante vragen,” een aanpak die mensen met dementie in staat stelt kenbaar te maken wat voor hen belangrijk is. Onderzoekers kunnen hierdoor “meer zeggen” over dementie, en interessante subject posities aan het licht brengen.

KEYWORDS:

• Care
• dementia
• methodology
• Netherlands
• research
• subjectivities

Fears about dementia are common in contemporary Western societies. In part, such fears can be explained by the “hypercognitivity” (Post 2000) that emerges from the liberal tradition of thought underpinning these societies. The “fourth age imaginary” (Higgs and Gilleard 2014, 2015) depicts life with dementia as characterized by inevitable loss and decline, with a gradual fade of one’s memories and decision making capacities, and a certain descent into darkness (Gubrium and Holstein 2003:216; Hashmi 2008:209–210; Van Gorp and Vercruysse 2012:1277). Outside of an emerging body of non-academic literature and theater that helpfully highlights the ambivalence inherent to dementia (e.g. Geiger 2011; Roosen and Boonstra 2010), people with the condition are all too often depicted as getting lost to those around them before they have actually died – as living dead or having had a “death that leaves the body behind” (Behuniak 2011; Moser 2008:104). Here, a life with dementia, pitted against aging qualified as “successful,” or “active,” or “productive” – captured by policy terms like “successful aging” or “aging well” – is depicted as a threat to the very essence of what is perceived to make us human: the ability to reason, to remember, to recognize others, and to express our preferences.

Crucially, such grim plot lines, metaphors and stories are not mere semantics. Instead, they shape how the world is, and what may be done (Haraway 2016:128; Law 2000:17; Sontag 1978). The discourse of decline and dysfunction holds authority in social life, in that it can invite detachment, dehumanization, mockery and institutionalization of people living with dementia. Moreover, it can overshadow more nuanced accounts of life with dementia. Doing so may lead people who receive a dementia diagnosis to imagine life after diagnosis as overly negative, causing them to perceive this future as an “unwanted future” (Lemos Dekker 2020). Consequently, there is an urgent need for alternative ways of understanding, depicting and imagining life with dementia.

Qualitative research can provide important insights into dementia and its impacts on those individuals, families and communities that live with it (Carmody et al. 2015) and a direct challenge to the conception that dementia inevitably entails a life characterized by loss and decline. But doing research with people with dementia is not at all a straightforward endeavor. The symptoms that affect language and memory that are associated with the various forms of dementia – including expressive language difficulties, word-finding difficulties (“aphasia”) and gradual decline in long-term memory – render conventional qualitative data-collection methods such as interviews and focus groups inappropriate, and at times even harmful (Mckillop and Wilkinson 2004). In the 1980s and 1990s many dementia studies aimed at gaining an understanding of experiences of and life with dementia, restricted research participation to those in the early stages of the condition (e.g. Gillies 2000). Other research drew on so-called proxy accounts, that is, accounts provided by carers or next of kin (e.g. Keady and Nolan 1994). Whilst such studies have elicited valuable insights, they cannot capture accounts from people with advanced dementia themselves. Arguably, it is these methods that contribute to the understanding of expressive language impairment as a hindrance to research participation (Lloyd et al. 2006; Pols 2005). In other words, it is not the loss of self or the loss of a desired future per se that threatens those with the condition, but the loss of the possibility to participate in society, including as a research participant.

Including people with dementia in research is important for at least two reasons. Firstly, understanding the experience of those who have trouble expressing themselves in verbally coherent ways is a starting point for intimacy and empathy. It can help to map out how one may adequately respond to those whose behavior is poorly understood and to organize their care. Secondly, it is important to uncover whether and how interpretations of their experiences are distorted by others’ ideas and fears about what a life with dementia might be like – not least to dispel the problematic division between “us” and “them” (Kitwood 1993:543).

An important change in dementia research occurred in the 2000s, reflecting an earlier paradigmatic shift away from a patriarchal, biomedical gaze toward a focus on people’s “lived experience” and first-person accounts (Barbour 2011; Clifford and Marcus 1986; Csordas 1990). A small, but growing number of researchers sought to include people with dementia in research through other means. Key to these approaches is a move away from methods that require study participants to provide coherent accounts. For instance, Basting (2006), Baldwin (2005), and Glavind and Mogensen (2022) propose to take the stories of people with dementia, however fragmented and “fragile,” as a form of self-expression that need not rely on facts and coherence, but can include sound and movements as well as words. Similarly, Capstick (2012) and Collins (2021) use co-created video with people with early-onset dementia and people with dementia in hospital settings respectively. The medium of video allows the capture of a wide range of communication strategies beyond words alone, which opens up new possibilities for research participation. In her phenomenological study on dementia care in the Netherlands Kontos (2005) moves away from language altogether. Drawing on extensive observations in Dutch nursing homes, she highlights the embodied engagement of people with dementia with the world as an alternative to the collective, cognitive activity that selfhood is usually understood to depend on. For instance, when resident Molly pulled her string of pearls out from under her bib, Kontos takes this as a gesture that conveys her continued selfhood in terms of class and gendered identity (2005:561).¹

Methods that include arts, storytelling, and observations such as these enlist the participation of people with (advanced) dementia based on what they can do, rather than exclude them based on what they cannot do. Notably, in using these methods, the task of the researcher also changes: it becomes one of making sense of the behaviors and movements of a person with dementia with little or no verbal confirmation. Ethnographers are well equipped to put into words what was not in words before (Hirschauer 2006). Refining and theorizing methods that can capture and interpret alternative ways of living with dementia at the stage when those with the condition are minimally verbal is a pressing and important task. In this article I propose using “hanging out” as a method to articulate what I call “interesting subject positions” for those who live with dementia, now and in the future.²

Building on the work of Vinciane Despret, I suggest asking “interesting questions” as an additional task for dementia researchers, that is, questions that enable an unexpected expansion of that which is already known. This involves expanding the possibilities for people with dementia to participate in research, with the aim of bringing to light previously unarticulated ways of living with the condition. “Hanging out,” as I will go on to describe, can help generate and answer such questions, and in doing so, can contribute to the enactment “interesting subject positions” for people with dementia and those around them.

Observing enacted appreciations

Taking concerns of people with dementia into account in research means to avoid relying too much on verbal communication with regard to one’s methods (but equally, and importantly, not to dismiss verbal expressions either (see Glavind and Mogensen 2022)). Here, I am not so much interested in merely “the experience of dementia,” for the lives of those with dementia revolve around much more than being ill. Neither am I interested in expressions of continued selfhood, as notions of “self” and selfhood seem to imply coherence and boundedness, as in “the self” or “the subject” (Rose 1996). Instead, I am interested in subjects and subject positions, in particular those that diversify the understanding projected by the gloomy social imaginary of dementia, which may be elicited through “hanging out” and observing what people do and how they do it. Drawing on previous work on subjectivity and subjects (Deleuze and Guattari 1987; Krause 2018; Moser 2005; Pols 2005; Rose 1996:288–339), I understand subjects in an open, processual way: not as preexisting entities, but as constituted in practice, taking shape in the collection of changing connections or “assemblages” that enact, shape or change their characteristics, skills and properties. In contrast to what the fourth age discourse suggests, these are relational, and always in flux. As I will go on to elaborate, this fluidity can be perceived as a threat if identities are assumed to be fixed or singular, or a possibility if this openness and fluidity can be embraced. I take the notion of subject positions to point to the embodied nature of subjects (Pols 2011) and to their agency as they are enacted in relations to other entities (Law and Mol 2008; Mol 2010). Focusing on subject positions and their enactment allows me to explore how care workers and researchers can contribute to what can make life with dementia, however temporarily, a “good life” (see also Driessen 2019).

In developing an approach that allows me to learn about life with dementia, and specifically how life with dementia can be good, I draw inspiration from Jeannette Pols’ study of long-term mental health care in the Netherlands. Pols found that in researching people who are not easily understood as verbally coherent, the “patient perspective” was impossible to capture:

To have a perspective, one needs language. … . Thus, if a patient is not able to produce words, he or she is excluded from inquiries into the patient perspective. Silent patients cannot be represented as subjects in research. … Asking for a perspective thus creates a difference between those with a perspective and those without one. It fails to represent silent patients. (Pols 2005:206)

Pols takes her cues from how care professionals relate to the people with whom they work, and calls for a shift in focus from what people say to what people do. She invites researchers to pay close attention to what desires and preferences people express physically and behaviorally, and to take these seriously as “enacted appreciations.” Significantly, talk itself is not dismissed as outside of, or indeed opposed to practice, but taken into account as a performative practice in itself. That is, not only what is said, but also when and how something is said matters (Pols 2005:210). No longer dependent on people’s ability to “talk about” things, researchers can analyze activities and routines, and bring these into writing (Pols 2004:24). In doing so, Pols opens up possibilities for researchers to glean new subject positions for people with dementia. For Pols subjectivity is not an individual matter, but rather related to situations (Pols 2005:214): rather than exploring expressions of appreciations as separate from the material possibilities that allow for them to come into existence, researchers should take these expressions into account. Importantly, relying on cognitive and linguistic methods such as interviewing are no less “biased” than observation is. Whereas asking interlocutors questions may seem straightforward, their answers hide subtleties and particularities that may only be noted in practice. For instance, tapping one’s feet may tell us more about someone’s appreciation of music, than if they said that they find the music enjoyable.

The key to Pols’ approach is that she asks questions that people who struggle with verbal expression can actually answer. The question “what does this person like?”, for example, can be answered through doing something, such as staying, walking away, nodding, maintaining eye contact and many other ways. Observation of such appreciations and situating them is best done through ethnographic methods. In contrast to research about people with dementia, or even research interested in “the experience of dementia”, scholarship that “appreciates appreciations” (Mol 2010:262) is about being with people with dementia (Seman 2002), or about “hanging out” with them to allow for new forms of collaboration (Pols forthcoming). In what follows I will demonstrate how hanging out allowed me to articulate what I call “interesting subject positions” for people with dementia.

Asking interesting questions

As an anthropologist interested in subject positions, I cannot assume that I can “identify” or even “point to them” in the practices I observe. Instead, I am complicit in their becoming. If, as Pols suggests, subject positions are co-produced by others, words and things (Pols 2011), it is no longer possible to hold on to an understanding of research as separate from the subject positions of those we study. So rather than eschewing one’s “influence” on the field and the data-collected, I embrace “hanging out” as an opportunity for bringing about interesting subject positions for those I work with, and perhaps for those around them too.

My thinking on this has been inspired by Vinciane Despret’s thought-provoking work on animals and their researchers (Despret 2004, 2006, 2016). In Sheep do have opinions (2006), Despret describes the research practice of a primatologist-turned-sheep-researcher, Thelma Rowell. Seeking to broaden ways in which sheep become visible to their researchers, Rowell puts out 23 feeding bowls for 22 sheep, to shift the focus on competition that researchers have too long imposed on them, for it was what was easiest to see. In Despret’s reading, the twenty-third bowl “expand[s] the repertoire of hypotheses and questions proposed to the sheep” (Despret 2006:367–368). Note the collaboration that is inherent in this approach: it hinges not on “who” knows but on who can make others capable of knowing (Despret 2006:363). Using Bruno Latour’s terms, Despret asserts that the bowl is a device that allows the sheep to express themselves in ways hitherto unknown and thus to become “more interesting” (Latour 2000). The effect of doing research in this way results in additional, rather than fewer, understandings of “what is going on” (Despret 2006:363). Despret’s approach thus hinges on the methodological commitment to add and complicate, to situate and multiply – amounting to “additive, rather than subtractive empiricism” (Latour 2016:ix).

I read Despret’s chapter as a call for researchers to do “research on the conditions that make something interesting” (Despret 2006:363) through asking questions that “offer an interesting becoming for those to whom the question is addressed, that is, the question that construes and constructs signs that ‘make a world’ for [those under study]” (Despret 2004:124). This means to allow those who are being researched to actively take part in the production of knowledge: asking interesting research questions offers its subjects opportunities to become perceptible in terms of what is interesting to them, and by extension, to the researchers. And so, when researchers ask questions that make their subjects more interesting, their subjects are given a chance to be interesting, and, in turn, the researcher is enabled to say more about the phenomenon of interest (Despret 2006). This is explicitly not to say that the researcher pre-defines what is or is not “interesting.” Instead, in her observations and analysis, she wants to be attentive to what emerges as good in the practices under study, according to the participants in her research (cf. Harbers et al. 2002; Pols 2011).

I here take up Despret’s invitation to ask interesting questions, namely the kind that expand the repertoire of questions that ordinarily feature in research about dementia, and therefore also the answers. In pursuing this exploration, my contribution is twofold. Firstly, I am formulating lessons about the care for people with dementia: I outline areas of practice in which I observed the enactment of “interesting positions” for people with dementia in everyday residential care, that is, positions that offer novel possibilities of being interesting for people with dementia themselves. In these practices, interesting subject positions are enacted through which the good life with dementia, however temporarily, can take shape. Secondly, I seek to draw out lessons for research practice: I demonstrate how researchers, through hanging out and posing interesting questions, can become sensitive to these myriad ways of “doing life with dementia.” I argue that researchers can articulate interesting subject positions that are enacted in these practices, and thus become active in their enactment.

Hanging out in the nursing home

I draw here on my doctoral research, for which I conducted 14 months of participant observation between September 2013 and July 2015 at three residential care homes (Driessen 2017, 2018, 2020; Driessen and Ibañez-Martin 2019). Against the backdrop of a social imaginary in which people with dementia are depicted as passive, disoriented and becoming lost to others, I paid close attention to practices in which the dominant imaginary of dementia was challenged. I sought to answer the following questions: What may interesting subjectivities for people with advanced dementia entail? What different ways of being do these bring about for people with dementia? How can researchers contribute to the enactment of such subject positions, and how can they learn more about life with dementia by doing so?

As a participant observer, I ate with residents in the care and nursing homes, joined them for their training for a local walking event, and attended their physiotherapy sessions, newspaper reading and dance afternoons alongside them. Through such “hanging out” I learned to become comfortable “just” sitting with them, despite the bustle of institutional life. Indeed, I often watched television with residents, or observed the care workers rush by, as long as I could bear without feeling obliged to help. Of course, I was aware that my sitting-with-them was different from their sitting-with-me in that the nursing home was not my home, but indeed my place of work, which I could leave at any time. Nevertheless, hanging out with residents did help me to understand their associations and behaviors as more coherent, sometimes in ways that I found care workers could not, merely by not having seen or heard things that occurred that day. Ironically, it was often the residents themselves who called upon me to “do something” as I was young, after all. One resident complained that lately, more and more young people could be observed just hanging around!

I also participated in the care for residents where my lack of training allowed for it. Care workers were quick to solicit my help, and although I initially hesitated, I rarely refused as time was always of the essence. So particularly during busy times (mornings, meal times and evenings), I made sure residents were safe when a care worker needed to step out; I made beds; I accompanied residents from their room to the living room and I provided assistance with dishing up as well as eating and drinking where needed. This undoubtedly changed how residents saw me, although I got the sense that most residents seemed to recall that I often had a lot of time for them (a luxury care workers did not have). Conversely, it allowed me to build rapport with staff.

My participation in care tasks also did something for the way I could make sense of what exactly I was interested in: through shifting between being-with care workers and being-with residents, I learned to appreciate the differences in the rhythms, pace, and order of the day for care workers and residents. I could reflect on the kind of interactions that were available to me, in that “having an agenda” (besides, of course, “collecting data”) brought a different dynamic in encounters with residents than not having one. Moving between the two types of participation helped me to become attentive to clashes between the institutional rhythms and logics, and residents’ wishes, as well as to the small nuances that made a significant difference for how any resident’s day could unfold. And so moving between types of participation helped me both to focus my observations, and widen my sense of what could be relevant to the enactment of interesting subject positions.

I also conducted semi-structured ethnographic interviews and informal conversations with staff members. In these conversations, I drew extensively on my observations of care encounters that involved the interviewee and the residents. We discussed the dilemmas and tensions that staff experienced in their work, as well as the ways they sought to resolve them.

To analyze the data, I used a combination of analytical techniques, including coding and memo-ing in the qualitative data analysis software NVivo, and summarizing key themes. Over time, I familiarized myself with the data again and again, seeking out connections and themes to explore further.³ The themes formed the basis for the data chapters of my PhD thesis. The current article is based on the conclusion of my thesis, which contained the overarching methodological and theoretical contributions of my ethnography.

Interesting subject positions for people with dementia

In what follows, I highlight three sets of care practices in which alternative subject positions are enacted:

1. Desiring subjects: Creative negotiations of desires

2. Individual subjects: Catering to preferences

3. Appreciating subjects: Creating conditions for enjoyment

In the concluding part of this article, I draw lessons for research from the approach I developed, in the hope of inspiring other researchers to adopt a similar approach.

Desiring subjects: Creative negotiations of desires

The first set of practices involves those which involve a creative negotiation of desires. Morning routines in the nursing homes consisted of getting up, washing, getting dressed and doing hair and putting on make-up. All residents required help in one way or another, to varying degrees. This help can include laying out a selection of clothes in the order that they need to be put on, helping the resident up and into the shower, or guiding them when they are washing themselves. In the most advanced stages of physical dependence, care workers may wash and dress a resident in bed.

Generally, family members and care workers agree that these so-called “activities of daily living” (ADLs) must be accomplished – they are of vital importance. Frequently, however, just how this may be done is not so straightforward, because care home residents are not always eager to get up, nor convinced of the need to take a shower or to get dressed, at least not at the time when care workers are assigned to help them do so, even if there is some flexibility in timings.

Before I entered the field, I was relatively ignorant about the intricacies and difficulties of daily care in institutional settings. I learnt about them whilst standing by the beds of these elderly residents, lending care professionals a hand where appropriate. The resident I learned most from was Mr. Bakker, a resident with dementia who lived in one of the rooms on the first floor of the care home De Zonneweide. He was known among staff members as a stubborn man. In fact, his so-called “reluctance” to get out of bed and into the shower each morning, coupled with his frustration at not being able to express himself due to advanced aphasia (word finding difficulties) – expressed through swear words and sometimes aggression – had previously led to a violent confrontation between him and his care workers in the nursing home where he had lived before. This incident led to the suspension of the staff member involved and the transfer of Mr. Bakker to his current home.

My fieldnotes of the morning care for Mr. Bakker are messy depictions of seemingly mundane, and often complicated, encounters. They consist of my attempts to capture what was roughly the same routine: a care worker entering Mr. Bakker’s room with pleasantries and a smile on their face; Mr. Bakker responding in short, half sentences (“good morning”) signaling his reluctance to get up as yet (“No, am still sleeping. Go away”), to be showered, or to wear what they proposed. Mr. Bakker saying something along the lines of: “What you want, I don’t want. Always busting my balls.” I also took notes in a number of team meetings, some of which addressed the question of whether Mr. Bakker should be given medication. Each time it was concluded that preferably he should not be given any medication, as he seemed to be aware of what he was doing, and that he apologized too. Still, his care workers did not always know how best to go about providing his everyday care. Such situations were characterized by the difficulty of distinguishing between whether he was unable to do something or simply did not want to. This difference was crucial, as one could mean support and medication, the other meant nudging and patience on the part of the caregivers (and that, at least to some extent, responsibility could be expected from the resident, such as an apology).

In Dutch legal terminology, somebody who lacks capacity is called wilsonbekwaam, which translates as “will-incompetent.” The term is often used when referring to those in the later stages of dementia, when somebody is too forgetful or too confused to make and oversee the consequences of their decisions. When someone is deemed wilsonbekwaam, what they want may be deemed incoherent, unhelpful, “unwise,” or irresponsible, and so a consultee (a family member or a legal guardian) is appointed to make decisions on their behalf. The legal concept of wilsonbekwaamheid (“lacking capacity”) fulfills a key function in matters such as admission to a long-term care institution. In matters of daily care, however, the concept is less helpful. Because of course, desires and wishes do not disappear – if anything, in many people with dementia they seem to become stronger and more persistent. And so they become a concern for the carer who is trying to accomplish care tasks in their best interest.

In the framing of a competent will or the lack thereof, the positions that are available to people with advanced dementia are limited: if they are confused or incoherent, others can overrule their wishes and preferences. In line with this, when care workers described how they went about situations in which residents wanted something other than what they had in mind for them, many referred to having to “overrule” what residents wanted, to get certain tasks done. However, in practice, they rarely simply overruled residents’ wishes. Instead, they found ways to work with them. Asking interesting questions here, meant to offer both residents and care workers chances to demonstrate alternative ways out of this impasse. In other words, to ask questions to enable people with dementia and their care workers to share stories that add to our understanding of how to understand these situations beyond refusal of certain tasks and the overruling of such preferences.

Through hanging out during the morning routines, I became able to articulate the range of strategies and techniques care workers employed to accomplish the task of getting Mr. Bakker up without confrontation, including working with emotions, managing attention and creatively negotiating when and how tasks should be accomplished. Some of these techniques were talked about among staff. Strategies that tended to work for the morning routine with Mr. Bakker included opening the curtains or agreeing on a time at which they would return to help him out of bed, commonly 15 minutes later, after they had helped another resident. Mr. Bakker was often willing to get up after half an hour or so, perhaps having fulfilled his desire to stay in bed longer, or perhaps having forgotten his reluctance to get up in the first place.

Some care workers had additional strategies that they did not share with colleagues, but nevertheless found important and helpful to do.

Mr. Bakker just wants his white shirt with stripes; there used to be three, now there’s just one left. Sometimes things get lost in the back and forth between the care home and the home of his daughter who washes his clothes, care worker Joani explains. She insists he needs a new shirt and that his hair needs to be washed. He shakes his head and repeatedly says “no.” She explains that she is worried about the skin on his head, which is irritated and scaly. Because he does not like to be showered, she offers to wash his hair over a tub. As he agrees, she says in return she will wash his favorite shirt for him in the basin, so that he can wear it tomorrow. She later explains that she thinks it’s important to show that she and her colleagues “mean it and listen to him.”

A strategy like this – essentially a trade-off – shows how caregiving can be both specific to the care recipient, and to the caregiver. As another example of such individual strategies, Joani liked to talk to Mr. Bakker about fishing. That Mr. Bakker had been an avid angler was illustrated by the only picture that stood beside his bed. In talking to Mr. Bakker about fishing and about his friend, with whom she knew he had gone fishing most days, sometimes whilst showing him the picture, Joani created the best possible conditions to ask him to get out of bed. She used another strategy for the shower. Mr. Bakker suffered from claustrophobia and got very restless if anybody closed the bathroom door when he was being washed. However, he also disliked having the door left open, because he felt cold. Joani sometimes resorted to giving him a foot bath to keep him warm, so that Mr. Bakker would like a shower enough to allow her to wash him. Creating conditions for accomplishing the care tasks explicitly hinged on words and actions as well as things: by tinkering (Mol et al. 2010) with the timing of care, conversations, photos, bathroom doors and footbaths, the care worker and Mr. Bakker gained a position in which his desires counted and were worked with, rather than dismissed.

Through hanging out with Mr. Bakker and his care workers morning after morning, I learned to ask questions about what was happening in these encounters other than those that inquired about whether certain tasks were completed. Instead, I learned to ask how both care workers and residents invested in balancing and resolving precarious oppositions of what each of them wanted. Such questions made me sensitive to what residents wanted, and what this wanting related to, and, in asking this, to unearth when such wanting is disregarded or even overruled, or how alternatives are found through (often semi- or non-verbal) negotiations. To capture these efforts, I coined the term socio-material will-work – a term that brings into words the work that is involved in negotiating what can be jointly wanted (Driessen 2017). Of particular interest to me was the subject position that people with dementia gained through such work: a subject position in which what they want is taken seriously and carefully addressed.

Of course, taking residents’ desires seriously is not meant to say that what they wanted at any one time needed necessarily to be done. After all, one of the reasons why they live in the care home is because they can no longer make all decisions on their own. What it does mean is that their wishes are not simply disregarded by default. This differentiates the care from that of a “total institution”, in which all inmates are treated as homogenous in their needs (cf. Goffman 1961). What is more, not only care workers can align residents’ desires with their own. Residents can also work on their care workers’ wishes: a care worker can be convinced not to shower a resident that day, instead staying at the sink or postponing washing until the day after; or by showing appreciation for dance or specific foods, or a walk around the block, residents shape what they may desire. That residents and care workers can become desiring subjects in their encounter with one another and the materialities of care, provides an important counterpoint to the dominant image of people with dementia “lacking capacity” to make decisions. In articulating this, I seek to strengthen those practices that seek to avoid overruling or ignoring people’s desires and wishes, even if this is done “in their best interest”, and that instead give rise to good ways of living.

Individual subjects: Catering to preferences

Another area of practice in which care and nursing home staff and residents enacted interesting subject positions was food care. Hanging out during meal times attending to what residents did led me to critically engage with the idea that personhood can be unproblematically “maintained” and “upheld” in the face of constant change. Instead of understanding food provision merely in nutritional terms, I was prompted to ask what else may be of interest to people with dementia and their care workers in these practices.

Meals in all nursing homes were generally provided in spaces called “living rooms,” which were the main areas of the wards, furnished with tables and chairs. In all three residential homes food would be served from trolleys. In one nursing home, on days when a care worker made fresh pancakes, they were served from the inbuilt kitchen. When care homes and nursing home residents conveyed their appreciations for certain foods, ways of receiving food and taking food in, and mealtimes, this allowed care workers to cater to these preferences. Care workers tailored food care to individual residents by providing choice, knowing residents and catering to previous and new identities (Driessen and Ibañez-Martin 2019).

To provide choice, food workers would offer residents choices between various sandwich toppings at breakfast, two sets of meals in the evening, or whether to eat a pancake with or without cutlery on Pancake Thursdays. These offers allowed residents to express fleeting preferences that could differ from one day to the next, and could change in the face of varying levels of ability to take food in without the help of a care worker. But it required any one resident to be able to choose, and some found this increasingly challenging.

Preferences could also be catered to by knowing residents, whereby the care workers’ familiarity with a resident over time could stand in for a resident making a choice each time. For example, care workers knew that Mr. Bakker loved tomato soup, and often sent me over to his place by the entrance with an extra portion. Interestingly, offering choice could sometimes prove counterproductive, such as when a resident reprimanded me for not having remembered her favorite sandwich topping, although, as she went on to remind me, she had told me what is was before.

A third way of catering to preferences was to cater for previous and new identities.Care workers could support eating habits that residents had had in their younger years. These however could clash with newly acquired preferences, such as when Mrs. Jansen, a formerly vegetarian resident, had eaten the meatballs off her table neighbor’s plate, and developed quite a passion for them. The family members found this change of diet much harder to accommodate than care workers did, for their relationship with Mrs. Jansen went back much further in time than that of the care workers, and it had meant something to her as well as them. Her newly found love of meatballs conflicted with their mother’s identity as a vegetarian and seemed to enlarge the sense of loss they were feeling more generally. Perhaps their mother eating meat made their mother less recognizable to them in the way that they had known her – reminiscent of the pain Janelle Taylor addresses in her essay on her mother’s dementia, in which she posits that one should not ask whether the person with dementia still recognizes people around her, but whether they still recognize her (2008). To resolve the tension between the care workers’ conviction that good care was to support Mrs. Jansen's preferences was now, and the family’s understanding that, in contrast, good care would entail maintaining who she was before, a compromise was needed. In this case, the care workers and family members opted for giving Mrs. Jansen vegetarian meatballs.

Such compromises or solutions might not always be within reach. However, the situation does provide a first glimpse of a possibility how by “moving with” who a person is becoming (or, to use Taylor’s words, by granting them recognition even in the face of dramatic change), they stand to gain new and interesting subject positions in which a change of the person can be accommodated, rather than entail a loss of self. This, however, depends on what others around the person with dementia are willing, able and indeed enabled to live with (I will return to this point below).

Moreover, the ways of doing difference can overlap, such as when I was asked to help those who need some support with making their sandwiches.

I sit down next to Ms. Weinaart who had just moved to the care home a week earlier. On one of her first days, she has told me that she loves hagelslag (chocolate sprinkles that are part of a typical Dutch breakfast spread selection) on her sandwich, so much that she does “not ever want anything else.” Although I remembered this, I offered her the selection of spreads that are laid out on the table: two types of jam, peanut butter, ham and cheese. She snapped at me: “I told you I only like hagelslag! No need to bring me all that other stuff.” I felt guilty, like knowing her choice is to know her, and in asking for her preference despite knowing it, I undid some of that knowing her.

The above shows that providing food care is not straightforward, and in fact can be quite complicated. It highlights that individuality is neither given, nor stable. Furthermore, what kind of differences are attended to matter for what kind of individuality is enacted: residents were variously enacted as choosers, as people with preferences and with habits, even if these were changing.

Through these observations I was able to highlight that people with dementia seem to be held to a higher standard of continuity than those without the condition. Moreover, the idea that personhood must be “maintained” may block positions that present important alternatives to the dominant imaginary of dementia that projects ongoing decline and a loss of self, and practices that can help those around them to accommodate change.

Appreciating subjects: Creating conditions for enjoyment

A third and last area of practice in which I saw interesting subject positions being enacted for people with dementia was through creating conditions for enjoyment in activities and events, but also in everyday care. I came to pay attention to enjoyment through participating in the bi-weekly dance event that two staff members organized in the main hall of the care home (Driessen 2018). The event was borne from the enthusiasm of physiotherapist Leon and care worker Joani. Leon’s ambition was for residents to see that movement need not be a task or burden, but could be fun. Joani was primarily invested in getting residents’ family members involved in the daily life of the institution and to show them what people with dementia were able to do, instead of what was lost. Both organizers believed that touch and togetherness offered not only benefits for residents, but also for building and maintaining familial and professional relationships.

When the event first started, many staff members had to overcome a certain reluctance to get involved, but the enthusiasm of the two organizers eventually convinced them. After a while, the event was well attended by volunteers, residents, staff members and residents alike. One of the residents played music from the extensive tape and vinyl collection that filled every free shelf in his room on the second floor. The collection consisted mostly of music from the 1930s and 1940s. This resident-DJ always selected a specific theme for the day. The music could be heard in most parts of the three-story building and would even draw some hesitant residents out of their rooms. In preparation, Leon, Joani, participating family members and I arranged chairs into a circle. Staff, family members and volunteers joined us to support and dance with those who wanted to. Those who did not fancy a spin simply swayed along from the side, sipping the lemonade that was served for the occasion.

Initially I was anxious about leading or following people with brittle bones and unsteady legs across the temporary dance floor. I was no stranger to the idea that falling is best avoided by sitting down, but Leon corrected care workers about this, arguing that continuing to use one’s muscles was a much more efficient fall prevention strategy.

It takes a while for the dance to get going: the residents, the staff, the family members and volunteers all sit in the circle and sway lightly to the slow tunes. I help Leon and Joani hand out lemonade. “It’s different every time,” Joani tells me. “The man who plays the cassettes, which he recorded in the 50s and 60s, does not play danceable music. So no one is on the floor.” Then Leon asks for swing music. That works, and slowly people are starting to get up. It looks “gezellig” [cozy]. For me it’s hard work. Do I observe? Do I ask people to dance? Joani and Leon look at me. Okay, I’m in. I take one elderly person by the hand and take careful steps. After one song, I gently lead him back to his seat. Careful, careful… I fit into the fall prevention regime that Leon is working against so hard: last week he told me that the idea that all residents are “in danger of falling” means that healthcare staff constantly tell them to sit down. “And then people don’t get up anymore, and then you have to ‘activate’ people and that is so hard. Well then I don’t have to activate them anymore. You will hear it so often: ‘Just sit down, sit down.’” Here on the floor, I feel that way too; I want to prevent people from falling; I want to get them to their seat safely before their legs become tired. But then I am corrected in my assumptions: when I gently lead Mr. Reynders back to his chair at the end of the song, he gently pushes me back onto the dance floor as if to say: another round! And so we do, paradoxically strengthening his legs as we go.

Dance, as an activity that does not rely on cognitive skills per se, is an inclusive activity that gave many a resident – and us, as organizers, dance partners and observers – a good time, together. It even meant that care workers and residents gained a way of relating to each other- one that was more equal, and less task-oriented than the daily care routine.

Through hanging out during these dance events I became attuned to enjoyment as a goal of care, as opposed perhaps to maintaining physical health and preventing boredom. And so I began to look for what residents enjoyed in other activities and areas of life in the residential home, with successes. Various relationships came into view, each giving rise to enjoyment in their own way. A restless resident became calmer after a brief massage that her care worker gave her before helping her out of bed. Another resident swayed softly to the music that the care worker who prepared her bath had specifically chosen for her. A few residents licked their fingers in appreciation of the little bit of extra dessert that the food assistant had asked the chef to make them; and Mr. Bakker always got extra tomato soup, for he eats it with pleasure. Even on the deathbed enjoyment was a part of care: some days after Ms. de Lange had stopped eating, care workers and her family members did not try to convince her to eat, but attended closely to whether or not she was still interested in her favorite food and drink when they offered it to her.

Focusing on what residents enjoyed helped me to highlight that care work is also the crafting of conditions for enjoyment, which can happen in addition to, but often also as part of everyday, so-called “functional” care. Observing where enjoyment was achieved enabled me to re-scribe a life with dementia from one being devoid of enjoyment and pleasure to one in which becoming an appreciating subject remains a possibility.

The other lesson I drew from observing how care workers crafted conditions of pleasure is that enjoyment cannot be guaranteed, but that it requires a mutual effort. Although residents did not initiate the crafting of such conditions themselves, I demonstrated that they were active in bringing enjoyment about: a care professional may invite a resident to a dance, but for enjoyment to ensue, the invitation must be taken up. Again, residents play an active part. Becoming an appreciating subject is a relational achievement.

Conclusion: Lessons for researchers

I have argued that it is crucial for researchers to become sensitive to the myriad ways of living with dementia, by asking “interesting questions;” that is, questions that enable people with dementia to take part in knowledge production about what matters to them. In turn, researchers are enabled to say more about life with dementia.

Difficulties with verbal, coherent expression are characteristic of advancing dementia. This often means that people with advanced dementia are not included in research as participants. Crucial to including people with dementia, and perhaps people who are minimally verbal more generally, in research, is the use of a method that does not depend on verbal elicitation. In the ethnography I conducted on everyday life and care in Dutch residential care for people with dementia, I relied on “hanging out” with people with dementia whilst attending to “enacted appreciations” (Pols 2005). This approach afforded people with dementia the opportunity to share different stories about themselves than were already available. Doing so helped me to highlight practices through which subject positions that made life good were enacted, however temporarily, counter to the dominant imaginary of dementia characterized by loss and decline, so that these practices can be strengthened and shared. Note that I do not mean “good” in a prescriptive sense. Rather, our field can teach us what concerns are most relevant, and we can come to care for them (De Laet et al. 2021).

Adding to the stories that circulate about dementia means to generate tools for articulation that make better social arrangements possible (Law and Singleton 2013). I told stories of how my interlocutors became desiring, individual and appreciating subjects. They were active in their enactment as willful, enjoying subjects with preferences of their own, that nevertheless were fluid and changeable. To tell these stories means not only to describe, but to “re-scribe” life with dementia (Harbers 2005; Pols 2014): they are not separate from the worlds they pertain to, but seek to interfere in them. Re-scription relies on bringing into words what was not previously in words (Hirschauer 2006). Indeed, the more people with dementia and their researchers can enable each other to become interesting, the richer a life with dementia can be made to be.

Ethical statement

Ethical clearance for the project was granted by the Amsterdam Institute of Social Science Research (AISSR) of the University of Amsterdam.

Acknowledgments

I am thankful to the people who worked and lived in the care and nursing homes where I conducted my ethnography, for teaching me so much about research and life more generally. I am furthermore grateful to my Kristine Krause and Jeannette Pols for the invitation to write this article about key lessons from my doctoral research, and for their dedication to helping me develop this work over the years. I also thank the other authors of this special issue, especially Helena Cleeve, for their collegial and constructive feedback on an earlier draft of this article. Finally, a big thank you to Steve Russell for finessing the language and clarity of the manuscript and to the editors Rebecca Marsland and James Staples for guiding me through the submission process.

Disclosure statement

No potential conflict of interest was reported by the author.

Additional information

Funding

The research was funded by the Gieskes Strijbis Fund (award-id Bijzondere leerstoel Anne-Mei The “Langdurige zo award-idrg, in het bijzonder voor mensen met een dementie”) and the University of Amsterdam.

Notes on contributors

Annelieke Driessen

Annelieke Driessen is Ethnographer/Post-doctoral researcher at the Nuffield Department of Primary Care of the University of Oxford. She obtained her PhD in medical anthropology from the University of Amsterdam in 2019. Annelieke is interested in tacit knowledge in institutional care practices and the forms of life they contribute to. She has explored this ethnographically through the study of everyday dementia care in the Netherlands, of discontinuing and not beginning new treatment at the end-of-life in Great Britain’s National Health Service (NHS), of patient experiences of intensive care and COVID-19 in the UK, and, most recently, in relation to initiatives to improve access to primary care services in England.

Notes

1. How researchers may study how language is implicated in practices of care when they themselves do not (fully) understand it has recently been discussed by Luise Schurian-Dąbrowska and Kristine Krause (2023, this issue).

2. Through imagining alternative futures with dementia, we are not only thinking about what the future may hold for us, we are also actively shaping its possibilities. What is imaginable, becomes liveable. In the Dementia Letter Project, I asked friends, colleagues and others who were interested to write a letter to their possible future self with dementia. The result is a wonderful, rich collection full of inspiration of how to fashion another future, and therewith clues for how to interact differently with people with dementia in the present [See https://www.anneliekedriessen.com/dementia-letters]. For a reflection on what lessons these letters hold for imagining dementia otherwise, see Driessen (2022) and Driessen and Cowan (2023).

3. For more details on the sites of my research and the key research questions see my thesis (Driessen 2019).