Thinking differently about day programmes and care

In this paper we respond to the need to better understand day programmes and their effects for families by taking Mol’s (Reference Mol2002) approach to studying services (like day programmes) as a package of relations that make up the realities in which they are lived. The task then is to work to ‘unravel’ how these services work well, when they do not and when they might work better. To do this we tell the story of one participant in an ethnographic study of the relations between day programmes and people living with dementia at home (see also Symonds-Brown et al. Reference Symonds-Brown, Ceci and Judge2022). Case studies of community care interventions can offer important information about how they are lived in the complexity of everyday life (Paparini et al. Reference Paparini, Green, Papoutsi, Murdoch, Petticrew, Greenhalgh, Hanckel and Shaw2020). From this perspective, the lived realities of a health-care service are, in fact, the ‘central plot’ and not the side story of how services work (Greenhalgh and Papoutsi Reference Greenhalgh and Papoutsi2018, 2), providing key information as to how to make services as useful as possible to people.

Additionally, we bring a material semiotic approach to thinking about care and its socio-material arrangements. From this perspective, day programmes can be understood as a health technology ‘in practice’ enacted within and by the relations of home and the broader care infrastructure. Through attention to these relational and material arrangements of care, we show how a day programme can configure the versions of life made possible for a person living with dementia and their family over time. In an effort to stimulate new imaginaries of health and care systems for people living with dementia at home, we argue that the ways in which health interventions are conceptualised and studied matters. These conceptualisations shape what we understand as their effects and possibilities and, more importantly, they offer direction as to what can be improved upon. We begin with a short overview of the theoretical framing that informs our understanding of health services as technologies ‘in practice’ and then describe the study and its findings.

Situating day programmes as health technology

The conception of a programme as a technology is less common in health-care research and evaluation than analyses that typically focus on technology as medical devices or information systems (Sandelowski Reference Sandelowski1999). However, in our analysis we draw on a broader definition of health technologies that is inclusive of ‘physical objects, procedures, social interventions, and health care systems’ (Timmermans and Kaufman Reference Timmermans and Kaufman2020, 584). In these terms, health technologies have in common that they all involve strategies ‘developed to solve a health problem and improve quality of life’ (World Health Organization n.d., para. 1). Health technologies are enacted to produce societal transformations, largely through their ability to question or establish new social relationships and to stabilise certain orderings of everyday life according to their particular and embedded rationales (Schillmeier and Domenech Reference Schillmeier and Domenech2010).

Embedded rationales are apparent in ideas of care in the community for people living with dementia, as well as in the strategies intended to support care at home. These rationales involve particular ideas, and ideals, about individuals, community, care, dementia and space. For both individuals and formal providers, strategies to provide care are designed based on representations of what ‘could be’. Within these strategies, particular ideas of care are made manifest and work to both organise and produce relations between materially distinct elements, such as the people involved and the tasks and spaces of care (Law and Mol Reference Law and Mol1995). These ideas are material in that they connect to ways of doing things with particular actions and/or materials, and they are held together through organising activities like strategies (Cooper and Law Reference Cooper and Law1995, 245), which often materialise as interventions in the form of health technologies. In these terms, day programmes can be understood as a health technology offering ‘care in the community’ for people living with dementia at home. However, health technologies such as day programmes do not simply exist on their own. Rather, they are built into existing care infrastructure, the sort of relations or ‘tracks’ on which formal care in the community runs, creating paths and movement through a configured system that classifies and channels people into particular care settings (Star Reference Star1990; Symonds-Brown et al. Reference Symonds-Brown, Ceci and Judge2022). Within these infrastructures, assemblages of overlapping and entangling technologies, people, materials and objects, and their logics connect and interfere with each other as they work out terms of connection and flow (Farias and Blok Reference Farias, Blok, Blok and Farias2016; Langstrup Reference Langstrup2013; van Pijkeren et al. Reference Van Pijkeren, Wallenburg and Bal2021).

Material semiotics of ‘technology in practice’

With origins in Science and Technology Studies (STS), material semiotics is a sensitising tool based on a relational worldview that works to draw attention to the heterogenous, relational and uncertain social and material practices that make up our world (Law and Singleton Reference Law and Singleton2013). This is a useful approach from which to consider health technologies and their effects. Instead of assuming that phenomena like technologies and their related infrastructures are stable entities, an analysis informed by material semiotics assumes that technologies are social-material accomplishments achieved by a variety of actors, both human and non-human, coming into relation in a particular way within specific practices. The effects of a technology, then, are not only technology-centred (technical determinism), with users positioned as merely passive recipients; nor are technologies passive objects shaped only by human ideas/actions (social essentialism). Instead, from a material semiotic view, technologies and people/users are mutually defined and defining through recursive relations enacted within particular configurations. This understanding of ‘technology in practice’ situates what health technologies do and how they work in heterogeneous relations with other people, things and spaces as an open empirical question (Timmermans and Berg Reference Timmermans and Berg2003), which can be investigated by examining ‘the way in which they [technologies] build, maintain, and stabilize a structure of links between diverse actants’ (Akrich Reference Akrich, Bijker and Law1992, 206). Understanding any technology, then, requires observations of both the technical and the social or, as Akrich (Reference Akrich, Bijker and Law1992) explains, moving from the established ‘inside’ to the ‘outside’ of a technology, looking for the relations it brings together, how it is adapted and used, and paying attention to the negotiations and breakdowns that occur.

To summarise, from this technology-in-practice approach, understanding how day programmes work as care in the community requires paying attention to how day programmes relationally materialise in and with a broader infrastructure of care in the community and specific family arrangements, how they are used and how this use is negotiated, as well as when there are points of potential breakdown. The effects of such technologies may include new subjectivities, forms of agency and relations with space. As Callon (Reference Callon, Pinch and Swedberg2008) suggests, configurations with technology can act as ‘agencements’ to make particular kinds of action and ways of being an ‘individual subject’ possible. The template of who an individual ‘is’ can be built into technologies in a way that affects the configuration of the arrangement and distributes agency in particular ways (Callon Reference Callon, Pinch and Swedberg2008). Because arrangements involve tentative and fluid entanglements over time, so do their configuring effects (Gan and Tsing Reference Gan and Tsing2018). Thus, in planning the study described here, we assumed that in a life with dementia at home over time, the day programme would emerge with family care arrangements in family-specific ways, enacting both possibilities and limits for care. It is these configurations of arrangements and their effects that we explore in this paper through an examination of the case of one study participant – Peg – an 87-year-old recently widowed woman who was living with dementia at home and attending a day programme.

The study

Peg was one participant ‘case’ in a larger ethnographic study examining how day programmes work as care in the community for people living with dementia and their families. The study was centred on two key objectives. The first was to explore the ways in which day programmes affected the everyday life of people living with dementia at home and their families, and the second was to understand how day programme care practices related to other formal and family care practices for people living with dementia at home.

Analysis

As is typical with ethnography, analysis was undertaken in an ongoing and iterative way during fieldwork. Attention was focused on reading field notes and then making analysis notes describing the relations between materials and the activities of the participants and staff, and their accounts of what they were doing or trying to accomplish. This would often lead to following particular practices further in the next field visit to understand the relations that supported them (i.e. focusing observations on certain routines, paperwork trails, procedures and informal interviews with staff or families). At the end of the fieldwork, all the field notes, transcribed interviews and photos were compiled into a single text document organised by participant and programme and then re-read closely alongside theoretical readings about care practices, infrastructure and organisational theory. During these close readings, open coding was done across each participant case to identify themes in their accounts, and how materials and relations came into being and changed across time and space. This was followed by tracing and comparison of materials and relations across cases. Following STS traditions, thick, descriptive, empirical case studies were created to ‘articulate and rework theory’ (Law Reference Law2008, 628). A central point of analysis in the case studies concerned the ways in which participant family care arrangements were adjusted and configured over time in relation to, and with, the day programmes. In each case study, the day programme emerged in specific relations and yet some common relations between day programme, home and broader community infrastructure were present in each case. Peg’s case story is one empirical example of ‘working through’ theory to show the day programme as a technology in practice and the configuring effects that emerge in specific relations over time.

Introducing Peg and the programme

Peg, who labelled herself an ‘old Saskatchewan farm girl’, a ‘nurse’ and a ‘mom’, had four children, two of whom lived nearby. At the time she was enrolled in the study, Peg had been experiencing symptoms of dementia for about three years and had been attending a day programme twice a week for one year. The programme was located in a hospital outpatient building and included a large programme for 20 older adults with medical rehabilitation needs and a smaller programme (the Oak room) for 8 people diagnosed with cognitive impairment.

Peg and the ‘scripts’ of the programme

But adding a technology like day programme support into the arrangement is not simply a ‘plug and play’ type phenomenon. Day programmes are not neutral or static entities; there are scripts embedded in the programme that come into relation with the arrangement’s people and places with configuring effects. Any technology is designed with ideas of who the user will be and what it will be used for (Rose and Blume Reference Rose, Blume, Oudshoorn and Pinch2003). These assumptions are ‘scripted’ into the design and shape, affecting both how users come into relation with the technology as well as the relations that are generated through its use (Akrich Reference Akrich, Bijker and Law1992; Oudshoorn et al. Reference Oudshoorn, Neven and Stienstra2016; Rose and Blume Reference Rose, Blume, Oudshoorn and Pinch2003). Besides positioning Peg as an active person with dementia, the programme care practices also work to circumscribe her in a particular role: Peg is a care receiver, not a caregiver. This is a sort of morality built into the programme, prescribing the roles of staff and clients and their capabilities (Akrich and Latour Reference Akrich, Latour, Bijker and Law1992). The division of roles becomes noticeable during participant observation when a new group member attends the exercise group and sits next to Peg:

Later, staff are asked about the new woman and how they support people’s transition to the programme. The staff say that it takes time but with this new woman, the issue is that the other patients are babying her, and that last week they had to tell Peg and Kay to stop trying to help her so much.

Since the programme is designed around a script of older people needing assistance, there is no room for mutual aide between group members. Instead, such efforts to help are framed by staff as a sort of interference in the operations of the programme. Here the configuration has a disciplining effect (Callon Reference Callon, Pinch and Swedberg2008), narrowing the subject positions available – programme participants are to be helped, not to help. Interestingly, it is the identity of ‘an old nurse’ that is often drawn on by staff in their reminiscing conversations with Peg, one that at times challenges the arrangement of roles scripted into the programme. But as Akrich and Latour (Reference Akrich, Latour, Bijker and Law1992) also point out, the scripts of technologies are not deterministic; they may be inscribed but can be de-inscripted by the actor’s resistance. So when Peg enacts this ‘nurse self’ of hers, she is redirected. Peg resists, and conflict ensues.

Through resistance to the one-way caring script, Peg maintains her identity as an ‘old nurse’ and a person who cares for others. As Peg reflects in her earlier statement, ‘I belong there but I don’t belong there’; some of her selves are included and others require work from her to maintain.

Looking ‘outside’ the programme

At home the family uses the day programme as a sort of anchor. They build other supports around it, finding other pieces of care to spread out and support the times away from the programme. The day programme’s script of supervised space extends beyond the walls of the programme and acts as a guide to the family as they look for similar activities on the other days of the week. They tinker with the arrangement, adding a yoga class (with great disdain from Peg), then an exercise class is trialled along with weekly trips to the mall with her caregiver. As Akrich (Reference Akrich, Bijker and Law1992) notes, technologies can ‘generate and naturalize’ (207) how we think about people and the world. The day programme’s effect on organising people and space beyond the programme walls is evident in Peg’s daughter’s (Sue) account of the challenge of trying to structure the week for Peg and the lack of suitable spaces for her:

Peg’s daughter’s comment suggests that there is a classifying effect of the day programme that works to define Peg and her world. Peg is enacted as a socially active person and also as a person with dementia who requires a certain kind of space where the inconveniences of her condition can be accommodated. As Moser (Reference Moser2005) notes, this idea of active agency is both a common feature and a bug of normalising orderings that guide interventions for people with disabilities. From the policy level to the practice level, there is a promotion of supports that can enact a person with dementia in these presumed ‘normal’, active ways – that is, as an independent and engaged senior with dementia. Moser (Reference Moser2006) explains that this ‘order of normal’ (374) is, in fact, limiting for people with disability in that it promotes a norm of a subject who is centred and independent, and ignores the actual distributed nature of agency as an achievement of many things working together – a view of agency that applies to most, if not all, of us. Through this normalising view, the web of supports seen as needed for Peg to achieve ‘normal’ activity seems somewhat insurmountable to her daughter, and to be found only in specific and restricted locales that work to limit Peg from accessing other less contained and containing spaces. That is, as independence as an individual achievement is posited as the norm, a division is established and enacted between the perceived safe inside and the risky outside of the programme. This inside and outside of the programme is further enacted in day programme practices that have configuring effects of dividing home and programme in particular ways.

Infrastructural arrangements of the day programme and the spatialisation of care

The day programme, while part of Peg’s home arrangements, is also part of a distal infrastructure of care (World Health Organization 2018). Within this infrastructure, the day programme is arranged into relation with and apart from other formal care structures such as home care, primary care acute and long-term care. This arrangement leads to the formalisation of step-wise increments of care and an established sequence of how services can connect or not. People move into and out of the day programme from these sites, shaping the technology of the day programme as a sort of intermediator on the paths created by a formal system that is oriented to what could be called ‘continuity of care’ (World Health Organization 2018). Gubrium (Reference Gubrium1990) notes that formal care systems are often designed in discrete service units that divide parts of the care trajectory that each service is responsible for. While this separation may be useful for defining specific mandates, the needs of everyday life with dementia rarely line up in the same linear, discrete way (Ceci et al. Reference Ceci, Symonds Brown and Purkis2018; Gubrium Reference Gubrium1990). In the case of Peg, it is these arrangements of inside–outside the programme that had serious effects when she experienced a change in health status.

Changing status and the limits of arrangements

Autumn comes, and First Author continues to follow Peg at the programme weekly and at home monthly. Peg’s gait becomes a little unsteady and she frequently tips sideways when she is standing up from a chair. She refuses to use a walker or cane. Staff also report that they see Peg becoming less active in games and more irritable with them at times.They say, ‘She is really going downhill with her memory.’

At home, Peg’s family have also noted some of the changes in Peg’s functioning, and decide that they need to have more help. They hire a regular weekend person to cover Gwen’s [Peg’s live-in carer] days off. Thanksgiving comes, and Peg’s ‘out-of-town’ son Mike comes for a three-week stay. He says he has noticed during this trip back that Peg’s memory has worsened and she seems to be more suspicious and irritable in conversations. He is wondering if there are medications to help stop his mom’s decline in functioning. He has not asked the day programme staff. He says he did drop his mom off on Friday at the programme and said ‘Hi to the ladies’, but didn’t mention it to them (Field notes, 14 October 2019).

It seems that somehow, while the family appreciates the programme’s social activities and relations, they don’t seem to think of the staff there as a source of feedback or information about Peg’s health or functioning. Communication home from the programme involves an activity calendar of planned events but no information about staff’s concerns about Peg’s obvious decline. Staff frequently account for this limiting information to families as a way to protect caregivers from spending time and energy on the person with dementia, revealing the day programme’s strategy of respite as creating space between ‘carer’ and ‘cared for’. This divide between programme and home is an effect of the design of the programme, something not only embedded in its practices but also reinforced in how interactions with it are conceived of and evaluated (Akrich Reference Akrich, Bijker and Law1992).

Two weeks later, Peg has become increasingly confused, and one afternoon at the programme, First Author notices her using the bathroom every 20 minutes. During craft time, Peg is distracted by a few coloured sprinkles on the floor. She is not her usual self. The staff notice this as well and say they could arrange for a urine test to be done there, but the nurse is only part-time, so they will not get to this matter until Monday. The staff work to connect with the family doctor and the family, but the material communication paths are clunky, and the feedback loops are not predictable. Several phone calls are made and voice mails are left, and finally, a week later, a urine sample is collected at the programme and sent to the lab. There it is processed, and results are sent to the ordering physician’s office and placed in Peg’s chart there. The nurse at the programme can see the results on the electronic health record and assumes that the doctor has prescribed treatment, but because the typical trigger for the test was not an office visit, the results are not communicated by the physician’s office to the family. As such, the delirium related to Peg’s confirmed but not acted upon, so the urinary tract infection continues, and Peg’s functioning continues to decline. Over a month later, during a holiday gathering, the family notes that her declining condition seems to be more than dementia, and she is brought to the doctor for another urine test and then, finally, a diagnosis of an infection is made, and treatment is started.

As Twigg and Atkin (Reference Twigg and Atkin1994) noted many years ago, evaluation of day programmes is literally bounded by the walls of the programme, making the extensions of its effects hard to consider. In Peg’s programme chart, for example, there were copies of letters sent to her family physician and to home care, a sort of extension made from the day programme as an attempt to connect or insert into the web of care services around Peg. But in practice, staff reported, despite these letters, they rarely received information from home care or the family doctor: ‘It’s really only one-way.’ There was no feedback involved in the arrangement. With Peg’s delirium, the demands for communication between home and the programme exceeded the usual scripts, and the bounded nature of the programme was challenged.

Despite the common goals of the care infrastructure, connections attempted between actors are not always the most efficient at addressing the issue at hand, pointing to the boundaries between parts of the arrangement, and the organising work going on to maintain these spaces as separate. Responsibilities are distributed among the various health technologies, and since the day programme is a respite solution, not a medical one, medical concerns must be referred elsewhere. So while the technology of the day programme includes practices of monitoring Peg and her body, and material forms of connection such as nurses, fax machines, voicemails and electronic health records, the local practices travel slowly, and only at certain thresholds of perceived risk, to other areas of the care infrastructure.

While separateness from the home is part of the day programme’s design for respite, it also creates conflict and work for staff. For example, when the staff hear of the delay in Peg’s treatment, they say that they wish they knew more about Peg’s changes at home as they recognise their impact on the programme. The recreational therapist says, ‘This is the part that is frustrating sometimes as we don’t have a good picture of what’s going on; like it would be good to know if she’s tired ‘cause maybe she’s been up or not feeling well.’ First Author asks the recreational therapist how she thinks the programme sets up families to know when and what to share about their family member’s condition. The recreational therapist explains, ‘Well, when they come for their first day, we tell the family to let us know about any changes in attendance and we give them this sheet of paper.’ However, the information sheet she points to primarily provides information about attendance rules and does not include any information about when to call. When this is pointed out to her, she takes a closer look and says, ‘You’re right, it doesn’t’ (Field notes, 15 January 2019).

Good passages, bad passages

Recognising the day programme as a technology in practice within a larger care infrastructure allows for a different account of when ‘things go wrong’ beyond one centred on staff knowledge or attitudes. Instead, despite the good intentions of all the actors, the design and the relational connections of the technology determine its limits (Poland et al. Reference Poland, Lehoux, Holmes and Andrews2005).

Moser and Law’s (Reference Moser and Law1999) ideas of good and bad passages are relevant in this situation. Moser and Law point out that the character of the materials that enable ‘passages’ between heterogeneous networks enacts people’s dis/ability. Good passages are about the ability to move easily between specificities, and bad passages lead to ‘awkward displacements’ that impair or stop the movement (Moser and Law Reference Moser and Law1999, 205). The arrangements of the day programme and its related care infrastructure create both good and bad passages for Peg as she attempts to move with a continuous biography between her home, the community and the programme. At times the arrangements enable Peg to spend a day out sipping coffee, playing crosswords and bingo with people she feels connected to. Other days Peg moves from home to the programme, and her subjectivities and attachments are not supported; she is limited in who she can be and what she can do. It’s perhaps not a terrible passage, but it is not as good. For example, classified as a person living with dementia and thus a care receiver, she is not able to continue her lifelong role of being a care giver.

Much of the time, the arrangements that support her in these passages remain invisible and are difficult to account for within the ‘bounded’ explanation of day programme space. Later, with the changes in Peg’s body, with her urinary tract infection and delirium, her specificities change, and the configured arrangements aren’t enough to accommodate her physically or cognitively. The practices oriented to maintaining the programme as a separate space result in limited connections to other parts of the care infrastructure, making the adjustments needed to enable a smoother passage for Peg difficult. The day programme’s relations within the larger care infrastructure both enable certain parts of its classifying and standardizing technology and limit its ability to accommodate specificity not already inscribed. Peg’s cognitive and physical changes shifted her out of the standard specificities inscribed in the programme. A certain helplessness emerges, and gaps appear between the care she needs and the care that is available. Discussion begins at home and the programme about ‘placement’.