Worldwide, the shifting landscapes of finite health and social care funding along with older people’s preferences for care at home and community inclusion are necessitating the evaluation of existing models of care and new imaginaries of life with dementia (Alzheimer Society of Canada 2022; Banerjee Reference Banerjee2023). Day programmes (also referred to as day centres and adult day services) are one example of an existing support for formal care in the community for older people that requires further examination to ensure its relevance to the needs of people living with dementia at home and their carers. Day programmes have become established as a form of respite care and more recently a place of social engagement for people living with dementia in many countries. These centre-based programmes are where people spend several hours during the day away from their carers engaged in group-based activities like games, crafts and music. With some geographical variability as to their history, these centres have existed in many countries for decades but have attracted renewed interest recently in policy solutions for decreasing the burden on family carers (Manthorpe and Moriarty Reference Manthorpe and Moriarty2014; Weir and Fouche Reference Weir and Fouche2017). However, despite their long-standing presence, the empirical base from which the design and implementation of day programmes can be guided is limited (Gaugler and Dykes Reference Gaugler and Dykes2019; Lunt et al. Reference Lunt, Dowrick and Lloyd-Williams2021; Orellana et al. Reference Orellana, Manthorpe and Tinker2020). At the heart of this scant empirical base is limited theoretical development related to how day programmes work, how they achieve their effects and the types of outcome possible (Dabelko and Zimmerman Reference Dabelko and Zimmerman2008; Gaugler Reference Gaugler2014; Gaugler and Dykes Reference Gaugler and Dykes2019; Manthorpe and Moriarty Reference Manthorpe and Moriarty2014; Zarit Reference Zarit2018). In most research, the processes of day programme use and care have been ‘blackboxed’ (Gaugler Reference Gaugler2014) As such, day programmes appear as neutral bounded spaces separated from home and other care services, resulting in evaluation that is limited to what occurs within the walls of the programme (Anderson et al. Reference Anderson, Dabelko-Schoeny and Johnson2013; Gaugler Reference Gaugler2014; Symonds-Brown et al. Reference Symonds-Brown, Ceci, Duggleby and Purkis2021; Twigg Reference Twigg2002). In this article, in an effort to work towards new imaginaries of social health and care for people living with dementia at home, we argue that the ways in which health interventions are conceptualised and studied matter. What a specific health intervention is understood to be shapes what we understand as its effects, including what possibilities can be imagined in terms of shaping directions for improvement. To examine these possibilities, in this article we follow Mol’s (Reference Mol2002) approach to studying care services (like day programmes) as a package of relations that make up the realities in which they are lived. The task then is to ‘unravel’ the relations that show how these services work well, when they do not and when they might work better. To do this we extend analysis beyond the walls of a day programme, telling the story of one participant from a larger ethnographic study exploring the socio-material relations enacted among day programmes and people living with dementia at home (see also Symonds-Brown et al. Reference Symonds-Brown, Ceci and Judge2022). By attending to the arrangements of care in this illustrative case study, we situate the day programme as a ‘technology in practice’, one that shapes the versions of life with dementia (Moser Reference Moser2011) made possible for the person and their family over time. We begin with a short overview of the existing research on day programmes for people living with dementia, followed by the theoretical framing that informs our understanding of health services as technologies ‘in practice’, and then describe the study and its findings and discuss these in light of our theoretical framework and existing evidence.
Day programmes: a short history and overview of research
Often conceptualised as a building rather than an intervention (Manthorpe and Moriarty Reference Manthorpe and Moriarty2014), there is significant inter-region variability in the design of day programmes, including their role in care, target population and use (Orellana et al. Reference Orellana, Manthorpe and Tinker2020). Although a complete overview of geographic differences is beyond the scope of this article, the design and delivery modalities of day programmes tend to vary in relation to local health-care system design and funding (Orellana et al. Reference Orellana, Manthorpe and Tinker2020; Tucker et al. Reference Tucker, Sutcliffe, Bowns, Challis, Saks, Verbeek, Cabrera, Karlsson, Leino-Kilpi, Meyer and Soto2016). In Canada, the site of this study, there is little country-specific day programme research available, with much of the evidence informing day programme policy coming from the United States (Orellana et al. Reference Orellana, Manthorpe and Tinker2020; Symonds-Brown et al. Reference Symonds-Brown, Ceci, Duggleby and Purkis2021). In Canada, the most common model of day programmes in use is that of a publicly funded generic day programme for older adults both with and without dementia. These programmes are intended to provide health and social care with few dementia-specific models in use (Savard et al. Reference Savard, Leduc, Lebel, Béland and Bergman2009). Day programmes for people in Canada are usually positioned as supplementary care within home-care respite services and are staffed with recreational therapists, support workers and sometimes nurses.
Day programmes are marked by a history of both shifting mandates and target populations that has created a legacy of sedimented practices that remain embedded in the current programmes, adding to the complexity of their evaluation. In North America and the United Kingdom, day programmes began in the post–World War II era and were mainly designed for short-term physical rehabilitation, or as a place between institutional and independent community living for people living with mental illness or intellectual disability (Weissert Reference Weissert1977). The inclusion of older adults as a suitable target population for these programmes gained traction in the 1960s; initially, people with dementia were excluded as the progressive nature of their condition did not meet the goals for rehabilitation-focused care (Goldstein et al. Reference Goldstein, Sevriuk and Grauer1968). In the early 1970s day programmes became interesting to those trying to plan for increasing numbers of older adults with dementia (Brody et al. Reference Brody, Lawton and Liebowitz1984). At first, rehabilitation goals dominated and day programmes were seen as a potential intervention for decreasing cognitive decline and preventing institutionalisation. However, these hoped-for outcomes proved difficult to achieve, leading to a shift in programme focus to that of respite for carers with the potential to decrease care burden (Fields et al. Reference Fields, Anderson and Dabelko-Schoeny2014; Gaugler and Zarit Reference Gaugler and Zarit2001; Tretteteig et al. Reference Tretteteig, Vatne and Rokstad2016). More recently, with increased recognition of the rights of persons living with dementia to social inclusion and personhood, day programmes have often adopted a secondary goal of social engagement (de Bruin et al. Reference de Bruin, Stoop, Molema, Vaandrager, Hop and Baan2015; Hochgraeber et al. Reference Hochgraeber, Riesner and Schoppmann2013; Strandenæs et al. Reference Strandenæs, Lund and Rokstad2017).
Broadly speaking, current evidence supports that day programmes do something good for some people some of the time. What that good is and the mechanisms that create it has been harder for researchers to flesh out. For example, while many studies cite high satisfaction rates and some decrease in stress for carers (Ellen et al. Reference Ellen, Demaio, Lange and Wilson2017; Gaugler et al. Reference Gaugler, Jarrott, Zarit, Stephens, Townsend and Greene2003; Liu et al. Reference Liu, Kim and Zarit2015; Schacke and Zank Reference Schacke and Zank2006; Zarit et al. Reference Zarit, Kim, Femia, Almeida and Klein2014), there are also findings of increased work for carers to get their person to the programmes (Berry et al. Reference Berry, Zarit and Rabatin1991; Bull and McShane Reference Bull and McShane2008; Gaugler Reference Gaugler2014; Weir and Fouche Reference Weir and Fouche2017) and accelerated time to placement (Gaugler and Zarit Reference Gaugler and Zarit2001; Weissert Reference Weissert1989; Zarit et al. Reference Zarit, Gaugler and Jarrott1999). There are fewer studies examining day programmes from the perspective of people living with dementia, but those that have included this perspective describe an increased sense of belonging (de Bruin et al. Reference de Bruin, Stoop, Molema, Vaandrager, Hop and Baan2015; Hochgraeber et al. Reference Hochgraeber, Riesner and Schoppmann2013; Strandenæs et al. Reference Strandenæs, Lund and Rokstad2017), structure (Brataas et al. Reference Brataas, Bjugan, Wille and Hellzen2010, de Bruin et al. Reference de Bruin, Stoop, Molema, Vaandrager, Hop and Baan2015, Strandenæs et al. Reference Strandenæs, Lund and Rokstad2017, Williams and Roberts Reference Williams and Roberts1995; Zank and Schacke Reference Zank and Schacke2002) and general well-being (Hochgraeber et al. Reference Hochgraeber, Riesner and Schoppmann2013; Zank and Schacke, Reference Zank and Schacke2002), as well as infantilisation and boredom (Black et al. Reference Black, Rubinstein, Frankowski, Hrybyk, Nemec and Tucker2018; Salari and Rich Reference Salari and Rich2001).
Despite the use of day programmes as a supplement to other forms of care at home, they are generally studied as stand-alone units, leaving their interactions with other services under-examined (Symonds-Brown et al. Reference Symonds-Brown, Ceci, Duggleby and Purkis2021; Twigg and Atkin Reference Twigg and Atkin1994). Additionally, like much ‘care in the community’, day programmes are typically designed and studied drawing on assumptions that tend to ignore the contested nature of care and the complexities of the social worlds in which they are created and implemented (Ceci et al. Reference Ceci, Björnsdóttir, Purkis, In Ceci, Björnsdóttir and Purkis2012; Matheson et al. Reference Matheson, Walton, Gray, Lindberg, Shanthakumar, Fyfe, Wehipeihana and Borman2018; Symonds-Brown and Ceci Reference Symonds-Brown and Ceci2024; Symonds-Brown et al. Reference Symonds-Brown, Ceci, Duggleby and Purkis2021; Twigg and Atkin Reference Twigg and Atkin1994). To ensure that day programmes are a helpful part of ‘care in the community’ for people living with dementia, a clearer understanding of the processes involved with their organisation and implementation (Gaugler Reference Gaugler2014), as well as consideration of the effects of their relations to home and other spaces of everyday life (Symonds-Brown et al. Reference Symonds-Brown, Ceci, Duggleby and Purkis2021), is needed.
Theoretical framework: material semiotics
To broaden the conceptualisation of day programmes and the care they provide, we utilised a material semiotic approach to thinking about care and its socio-material arrangements. 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). Through this lens we conceptualised the day programme as a health technology, drawing on the broad definition of health technologies that is inclusive of ‘physical objects, procedures, social interventions, and health care systems’ (Timmermans and Kaufman Reference Timmermans and Kaufman2020, p. 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). While it could be argued that this broad definition makes almost any health intervention a technology and risks diluting the term, we suggest that the complexity of programmatic interventions and their evaluation warrants new ontological conceptualisations to enrich understandings of what day programmes are and how they work.
Health technologies ‘in practice’
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, that come into relation in a particular way within specific practices. In these terms, the effects of technologies are not only technology-centred (technical determinism), with users positioned as merely passive recipients; nor are technologies merely 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. 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 infrastructures, or the ‘tracks’ on which formal care in the community runs (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 (Farías and Blok Reference Farías, Blok, Blok and Farías2016; Langstrup Reference Langstrup2013; van Pijkeren et al. Reference van Pijkeren, Wallenburg and Bal2021). What health technologies do and how they work in heterogeneous relations with other people, things and spaces then becomes an open empirical question (Timmermans and Berg Reference Timmermans and Berg2003) that can be investigated by examining ‘the way in which they [technologies] build, maintain, and stabilise a structure of links between diverse actants’ (Akrich Reference Akrich, Law and Bijker1992, p. 206). Understanding any technology then requires observations of both the technical and the social, or, as Akrich (Reference Akrich, Law and Bijker1992) 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.
In this study, drawing on this ‘technology-in-practice’ approach, understanding how day programmes work as ‘care in the community’ required attention to how day programmes relationally materialise in and with a broader infrastructure of care in the community and specific family arrangements, including how day programmes are used, 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 actions 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, configuring both possibilities and limits for care.
The study
The case study for this article comes from 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. 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 second was to understand how day programme care practices related with other formal and family care practices for people living with dementia at home.
Methods
In an effort to move ‘inside and outside’ the health-care technology of a day programme to see the relations among the day programme, home and the broader community, we used a multi-sited ethnographic approach to follow four people living with dementia across the time and spaces of the day programme and their everyday life at home. Given that, as Gaines and Whitehouse (Reference Gaines and Whitehouse2006) remind us, a critical issue related to dementia is the ability to carry out activities of daily life – dementia matters in terms of the ability to hold everyday life together and that ability is relative to context, resources, requirements – we chose not to recruit participants based on dementia severity, or to foreground diagnostic categories. Rather, we proceeded in the study with the understanding that the problems of dementia would present in specific ways within participants’ specific arrangements of everyday life (Ceci et al. Reference Ceci, Symonds-Brown and Purkis2019).
The study was undertaken in a mid-sized Canadian city. Participants were recruited through flyers distributed by two day programmes to their current users. We also recruited through dementia care-giver support groups located in close geographical proximity to these programmes. Data were collected using traditional ethnographic methods of observation, interview and document analysis (Hammersley and Atkinson Reference Hammersley and Atkinson2019). Author 1 completed all the data collection from May 2019 through January 2020. Participant observation at the two day programmes was undertaken for one to six hours a week for nine months. This observation involved being part of group activities, meals, care planning meetings, outings and staff meetings. Informal interviewing of those present during these activities was undertaken to explore multiple accounts of what was going on at the time. Data collection also involved observation during home/community visits. Home visits involved informal interviewing, observing daily routines or visits from other care providers, and taking part in activities of the home or community outings. Peg, whose case story is central in this article, was observed over a period of nine months for a total of 61 hours at the day programme, as well as 16 hours of observation at her home and during two community outings. Observation notes were kept in a field notebook then transferred into longer electronic fieldnotes soon after each visit.
Semi-structured interviews with each participant family were undertaken at the beginning of the study to gather an overview of family member roles, care routines and history of using the day programme and other supports. In addition, semi-structured interviews with four key informants were completed towards the end of the study. These informants were a dementia care policy planner, a regional manager and two programme managers. Information gathered in these interviews was related to the formal systems account of the organisation and allocation of day programme services for people with dementia. Interviews were undertaken in person and online, lasted 45–60 minutes and were audio-recorded and transcribed. Document analysis included day programme and community care policies, programming guides, family information letters, behaviour tracking, participant care plans and documented communications with family, home care and family doctors. Document analysis notes were included in electronic fieldnotes. Photos of materials at the programme, such as signs and public notices, were also included in the fieldnotes. The study was approved by the Health Research Ethics Board at the University of Alberta and all participants and guardians consented to be part of the study. In this article, pseudonyms are used for all participants and identifying data are anonymised (i.e. related to programme name and locations).
Analysis
As is typical with ethnography, analysis was undertaken in an ongoing and iterative way during the fieldwork. Attention was focused on reading fieldnotes and then making analysis notes describing the relations between the 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 during 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 fieldnotes, 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 conducted 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, p. 628). A central point of analysis in the case studies concerned how 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 configured specific relations, yet common relations among day programme, home and broader community infrastructure were present in each case.
It is these configurations of arrangements and their effects that we explore in this article 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. This case story recounts events that occurred over a period of 18 months between 2018 and 2020 and shows the course and effects of Peg’s and her family’s engagements with the programme. It is composed from data collected from family and staff interviews, programme documents and observation at Peg’s home and the programme. The story of Peg is one empirical example of the ‘working through’ of theory to show the day programme as a technology in practice and the configuring effects that emerge in specific relations over time.
Findings
In line with ethnographic methods, we present findings in the form of a case story and then offer an analysis of these recounted events. Case studies of community care interventions can offer important information about how these interventions 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, p. 2).
Introducing Peg
Peg described herself as an ‘old Saskatchewan farm girl’, a ‘nurse’ and a ‘mom’. She was recently widowed and had four children, two of whom lived nearby. For Peg, dementia manifested as a progressive loss of short-term memory, planning and problem solving. While she could carry on a hearty social conversation, she needed help with remembering medications, household tasks such as cooking and reminders about time, date and place. At the time she was enrolled in the study, Peg had been experiencing these symptoms of dementia for about three years, and had been attending the day programme twice a week for one year. The day programme was located in a hospital outpatient building in her small suburban city and included two groups: one group focused on medical rehabilitation programming for 20 people and the other group (Oak Room) for those with cognitive impairment. Peg began in the medical rehabilitation programme but was quickly switched to the Oak Room once the day programme staff realised the degree of her memory issues.
Peg and the programme
Peg began the programme shortly after her husband died, as the family looked for a way to keep her living at home and socially engaged. Peg’s sons explained that their biggest concern was their mother’s isolation and seeing her ‘just sitting in her chair’. The sons originally thought about moving Peg into a supportive living setting but realised that if she was going to be sitting in a chair looking out of a window, ‘it should be her window and her tree she was looking at’. At first they tried home care, but the family found that the limited task-oriented services did little to meet Peg’s social interaction needs. The family then hired a live-in care-giver, Gwen, so that someone was home with Peg most of the time and then, a little later, a place at a day programme became available.
Ron: So, I think that was what it was, just to get her out, and the social aspect. You know, being with people your age and your experiences and just to get you out doing something … you know, you … you are a social person, you like to be chatty, and she is a lot of fun and ….(Family interview, 15 August 2019)
At the day programme, Peg’s relaxed, friendly relations with the staff and other group members were obvious. Each day at the programme Peg was seated at a small table with other patients, their commonalities encouraged and provoked by staff discussion, and with opportunities for engagement structured through rituals such as morning coffee, game activities and meals. The staff joked with Peg who made sly comments back whenever craft activities which she did not like were offered. Peg was engaged with cognitive stimulation activities such as word puzzles and socialising activities such as games. She was encouraged to ‘go for a walk’ several times a day around the halls of the programme site, which were lined with pictures of local scenes and art that stimulated conversation among Peg and the other people. The staff frequently drew on Peg’s identities and attachments in conversations and activities, referring to her nursing background, her kids or her love of horses.
For the family, hearing about these activities at the programme maintained Peg as the familiar, humorous and socially engaged woman they knew. In Peg’s son Ron’s words:
She gets out with people, there is a couple of old ladies, and my brother says that she is as smart as a whip out there … they take jabs at each other and … Mom usually wins those arguments I think … with what is her name? [refers to staff member at day programme] (Family Interview, 15 August 2019)
For Peg, the day programme brought her connection to other people, and she did feel more connected in some ways. When asked what she liked about the programme, she explained:
Just the fellowship of other people … I think that is probably what it is. Because I don’t really feel that I am one of them …. Well, I guess I am. I can’t explain it. I belong there, but I don’t, I don’t belong there. Does that make a lot of sense? (Family Interview, 15 August 2019)
This partial connection to the other people was seen in some of the group activities observed. Peg was often aware of and concerned with others but also limited in her role within the group.
The Oak Room is set up for an exercise group with everyone sitting in chairs arranged in a circle; small hand weights are at the base of each chair. The staff turn on the 80s music and begin with arm movements. Peg is smiling at times, looking at others, and she is focused the exercises. Around the circle everyone but a new group member participates …. The new woman is talking to herself and not moving. About halfway through the session Peg is looking at the new woman and trying to gesture to the weights, while another woman (Kay) in the group has now started to also prompt the new woman to move her arms. It looks like this person’s non-participation is a concern or a distraction to the group, but staff continue on with no intervention. Peg and Kay look at the group leader pointedly, then shift their gazes back to the new woman. (Fieldnotes, 9 August 2019)
Later, staff explained how they support people’s transition into 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 last week they had to tell Peg and Kay to stop trying to help her so much.
Later, at lunch, Staff Gina tells the First Author that Peg is always trying to ‘nurse other patients’. I joke that old nurses never stop working, and she laughs and says, ‘Yeah, and when I tell her to stop babying the other patients, she bites my head off!’ (Fieldnotes, 16 October 2019)
At home the family used the day programme as a sort of anchor for Peg’s schedule of activities. They built other supports around the day programme, finding other pieces of care to spread out and support the times away from the programme. They tinkered with the arrangement, adding a yoga class (with great disdain from Peg), then an exercise class was tried along with weekly trips to the mall with her care-giver. Peg’s daughter Sue described the challenge of trying to structure the week for Peg and the lack of suitable activities for her to participate in:
‘The week is kind of unbalanced with Monday and Tuesday having nothing to do … so I wish the day programme was on Mondays too.’ When asked if Peg has ever gone to anything at the local seniors’ centre, she says, ‘I don’t think so … but do they have anything for people with dementia there?’ (Fieldnotes, 9 January 2020)
Sue explained that she would love to get her mom involved with something else but reiterated again that ‘there are few places for people with dementia’. When the First Author asked if a dementia-specific activity was necessary for Peg, who seemed capable of basic socialising, Sue says that with programmes geared for dementia, like the day programme, ‘they [the day programmes] know what they are getting’ (Fieldnotes, 9 January 2020).
As time went on, Peg’s gait became a little unsteady and she started tipping sideways when standing up from a chair. She refused to use a walker or cane. One day a slight limp led to the discovery of a bruise and discovery of a fall. Staff reported that they saw Peg becoming less active in games and more irritable with them at times. They explain all of this in relation to her dementia: ‘She is really going downhill with her memory.’
At home, Peg’s family had also noted some of the changes in Peg’s functioning and decided that they needed to have more help. They hired a regular weekend person to cover Gwen’s [Peg’s live-in carer] days off. Communication to the home from the programme involved an activity calendar of planned events, but no information about the staff’s concerns about Peg’s obvious decline. While family members expressed concern to Author 1, they did not report information to programme staff. Conversations between staff and family at the programme were usually social in nature and staff limited the information they provided to families at the end of the day. Programme staff accounted for this as a way to protect care-givers from spending time and energy on the person with dementia.
Several weeks later, Peg had become increasingly confused. She was not her usual self. The staff noticed this as well and decided that they could arrange for a urine test to be done there. The staff then worked to connect with the family doctor and the family, but the material communication paths were clunky and the feedback loops were not predictable. In Peg’s programme chart, 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 that, despite these letters, they rarely received information from home care or the family doctor: ‘It’s really only one-way.’ Several phone calls were made and voice mails left, and finally, a week later, a urine sample was collected at the programme and sent to the lab. There it was processed, and the results were sent to the ordering physician’s office and placed on Peg’s chart there. The nurse at the programme could see the results on the electronic health record and assumed that the doctor had prescribed treatment, but, because the typical trigger for the test was not an office visit, the results were not communicated by the physician’s office to the family. Thus, the delirium related to Peg’s confirmed but not acted-upon urinary tract infection continued, and Peg’s functioning continued to decline. At the programme she stopped doing crossword puzzles and seemed quieter. Her family hired a second staff to help out at home to ensure that the evenings and weekends were covered. At both home and the programme there were whispers of ‘placement’ looming. Over a month later, during a holiday gathering, the family noted that her declining condition seemed to be more than dementia, and she was brought to the doctor for another urine test and then, finally, a diagnosis of an infection was made, and treatment started.
Later, when the staff heard of the delay in Peg’s treatment, they said that they wished they knew more about Peg’s changes at home. The recreational therapist said, ‘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.’ When asked about how the programme orients families to when to share information about their family members’ conditions, the recreational therapist referred to a family information sheet. This sheet provides information about attendance rules but does not include any information about when to call the programme or what information to share. When this was pointed out to her and she took a closer look, she said, ‘You are right, it doesn’t’ (Fieldnotes, 15 January 2019).
Discussion
The study’s objectives of increasing understanding of the relational effects of a day programme on everyday life with dementia and how practices of the programme connected (or not) to home and other formal care practices were met. By opening up the taken-for-granted bounded space of the day programme we could then analyse effects that travelled between the programme, Peg’s home and the broader community/care system.
Configured arrangements
López Gómez (Reference López Gómez2015) offers ‘arrangements’ as a useful ecological and symmetrical tool for showing the diversity and precarity of how lives are configured and practised in relation with health technologies. In his study on telecare services for older adults, López Gómez (Reference López Gómez2015) found that the effects of reconfiguring arrangements are often overlooked when new forms of care technology are added into already existing routines. These effects included new subjectivities, forms of agency and relations with space.
In Peg’s case, the day programme began as part of a new arrangement of ‘home’ that emerged in response to Peg’s symptoms of dementia becoming more obvious to her family after the death of her husband. While changes in cognitive function existed before, there was a new perception of risk once she was living alone. Peg’s sons made efforts to keep her at home and found ways to support Peg in maintaining her social and material attachments. It was to this arrangement of people, places, materials, values and attachments to place that the day programme was added. Much of day programme evaluation research excludes consideration of the home space as a site of day programme effects, but it is clear that, in Peg’s case, the day programme is brought in to help arrange and stabilise a ‘home’. The day programme along with the materials of the house, neighbourhood and the family’s work together to enact a place that acts to ground who Peg is, and who and what she is connected to, securing attachments to people, places and identities of Peg that are familiar to her and her family. Attachments, as Hennion (Reference Hennion2017) explains, are ‘our ways of both making and being made by the relationships and the objects that hold us together’ (p. 118). These attachments stabilise the biographical continuity of Peg that her dementia challenges and the discourses of personhood insist upon (Foth and Leibing Reference Foth and Leibing2022). While her former attachments have decreased with the loss of her husband and her changes in memory, the day programme works to maintain her in ‘her chair at her window’, stabilised by a new network of attachments that enable her to act and choose her level of participation. Through activities such as family teas, bake sales and visits during pick-up and drop-off, Peg’s family’s attachment to the place and the people of the programme solidifies the programme’s relations within the family arrangements and shapes the expectations of this relationship. The day programme is brought into an existing arrangement of people, places, things and ideas. With this addition, configuring effects occur in the arrangement as the day programme and its new relational connections are accommodated. Through this shifting of relations, a certain ‘fit’ at the day programme is configured between Peg and the people, places, things and ideas of her life. Certain realities are made possible and others are not. Peg has a place she belongs to outside of the home. She is enacted as an active subject, recognisable to her family as the social person she has always been.
‘Scripts’ of the day programme
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 Domènech2010). In this understanding of health technologies, adding a technology like day programme support into a pre-existing arrangement is not simply a ‘plug and play’ type phenomenon. 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 both how users come into relation with the technology as well as the relations that are generated through its use (Akrich Reference Akrich, Law and Bijker1992; Oudshoorn et al. Reference Oudshoorn, Neven and Stienstra2016; Rose and Blume Reference Rose, Blume, Oudshoorn and Pinch2003). This means that day programmes are not neutral or static entities; they come with embedded scripts or rationales that involve particular ideas, and ideals, about individuals, community, care, dementia and space. For both individuals and formal providers, these lead to strategies like day programmes in which 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 relations are configuring on who people can be and what they can do. According to the script of day programmes, Peg is a certain kind of person needing a certain kind of care in a certain kind of space. Besides positioning Peg as an active person with dementia, the riskiness associated with her dementia is contained in the supervised space while the programme’s care practices also work to circumscribe her in a particular role: Peg is a care receiver, not a care-giver. 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, Law and Bijker1992). The division of roles becomes noticeable during the exercise group when Peg focuses on the new person who is distressed. Since the programme is designed around a script of the 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 on Peg (Callon Reference Callon, Pinch and Swedberg2008), narrowing the subject positions available for her – 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, Law and Bijker1992) 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 the statement ‘I belong there but I don’t belong there’, some of her selves are included and others require work from her to maintain. Other ethnographic studies have described programme participants’ perceptions of limited recognition of identities and engagement of people’s interests and capacities (Black et al. Reference Black, Rubinstein, Frankowski, Hrybyk, Nemec and Tucker2018; Salari and Rich Reference Salari and Rich2001).
Looking ‘outside’ the programme
Akrich (Reference Akrich, Law and Bijker1992) notes that technologies can ‘generate and naturalize’ (p. 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 how the family begins to see other spaces of the community in relation to the day 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. 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 older person with dementia. Moser (Reference Moser2005) explains that this ‘order of normal’ (p. 668) 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.
Dividing work
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. It is obvious that the practices of the programme extend outwards to connect to Peg’s family, but there are also boundaries drawn between the programme and home. Evident in staff’s interaction with families is the day programme’s strategy of respite as creating distance between ‘carer’ and ‘cared for’. This divide between programme and home is an effect of the design of the programme, something embedded not only in its practices but also reinforced in how interactions with it are conceived of and evaluated (Akrich Reference Akrich, Law and Bijker1992). For staff, the goal of care-giver respite predominates the ways families are brought into the space of the programme and the forms of communication they have with the home. This approach contradicts the research that shows that the sense of shared responsibility is often what family care-givers appreciate about day programmes (de Jong and Boersma Reference de Jong and Boersma2009; Gaugler Reference Gaugler2014; Tretteteig et al. Reference Tretteteig, Vatne and Rokstad2016). While separateness from the home is part of the day programme’s design for respite, it also creates conflict and work for both staff and family as Peg’s health declines; separateness becomes a problem creating limits to how and what information travels between home and the programme.
Infrastructural arrangements of the day programme
The day programme, while part of Peg’s home arrangements, was also part of a distal infrastructure of care (World Health Organization 2018). Day programmes are typically arranged in relation with and apart from other formal care structures such as home care, primary care and acute and long-term care. Within this kind of arrangement there is a formalisation of step-wise increments of care and an established sequence of how services can connect or not. Gubrium (Reference Gubrium1990) notes that formal care systems are often designed in discrete service units that divide responsibility for parts of the care trajectory. 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 Purkis2019; Gubrium Reference Gubrium1990). In Peg’s case, it is these arrangements of inside–outside the programme that had serious effects when she experienced a change in health status. Despite the common goals of the care infrastructure to keep Peg at home, connections attempted between actors were 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. Despite efforts by the programme to make extensions out to other services through phone calls and letters, there was no feedback involved in the arrangement between the day programme and the broader health-care system. Responsibilities were distributed among the various health technologies and, since the day programme is a respite solution, not a medical one, medical concerns had to be referred elsewhere. So while the technology of the day programme included practices of monitoring Peg and her body, and material forms of connection such as nurses, fax machines, voice mails and electronic health records, the local practices travelled slowly, and only at certain thresholds of perceived risk, to other areas of the care infrastructure. With Peg’s delirium, the demands for communication between home and the programme exceeded the usual scripts, and the bounded nature of the programme and other services had significant negative effects for Peg. This, however, is neither a new nor a unique issue. As long ago as 1989, Tester (Reference Tester1989), in a sizeable descriptive study of over 225 day programmes for older people in the UK, found significant isolation of day programme services from other health and social care services. However, this problem of lack of integration with other care services remains understudied.
Good and bad passages
Moser and Law’s (Reference Moser and Law1999) theorisation of good and bad passages is relevant to the case of Peg and the day programme and can help us think further about how day programmes work as ‘technology in practices’ within fluid arrangements. Moser and Law (Reference Moser and Law1999) 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, p. 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, she is classified as a person living with dementia and thus as 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 and a failure to make the adjustments needed to enable a smoother passage for Peg. 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 from the programme. Recognising the day programme as a ‘technology in practice’ within a larger care infrastructure and attending to its processes 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).
Strengths and limitations of the study
This case story was built from rigorous data collected from multiple sources including observation, interview and document analysis. The story of Peg is but one story of care in the community with day programmes. The advantage of an in-depth case study with multiple locations over time is in its illustrative value and it is not intended to be generalisable. Instead, the political power of ethnographic stories lies in its ability to interfere with taken-for-granted ideas (Harbers Reference Harbers and Harbers2005, Law Reference Law and Turner2009, Winthereik and Verran Reference Winthereik and Verran2012) and it is from this perspective that the findings should be interpreted. More time in the field, different sites and different participants would change the specifics of the story but not the socio-materiality or the fluidity of the relations revealed.
Conclusion
This case study adds to the theoretical and empirical base of day programme processes and helps those looking for mechanisms of how they work and where improvements can be made (Gaugler and Dykes Reference Gaugler and Dykes2019). It also offers an approach for social gerontology to consider when thinking about programmatic solutions and their evaluation.
Thinking about a day programme for people living with dementia and their families as a health ‘technology in practice’ offers an opportunity to see the variety of social and material actors involved and the extension of their relations beyond the walls of a day programme. It also challenges taken-for-granted ideas of day programmes as neutral, stable, bounded spaces, and offers the potential for new insights into what day programmes are and how they work.
If we are going to enable new imaginaries for ways of growing older in the community, we need to attend to the possibilities enacted by care arrangements. López Gómez (Reference López Gómez2015) explains that attention to existing arrangements of care is critical when adding in new care resources and ensuring that ‘help’ is actually helpful. These arrangements are not static; they are fluid and shift over time and place, configuring people, relations and places as they go. This has implications for practice and how we think about the health technologies that we design to support life at home with dementia. At times the arrangement of day programme care and family care can provide a sort of stabilising distribution of care and space to create possibilities for people to go on in day-to-day life with dementia; at other times the arrangement may create limits to the care made possible and add to care work. Rather than simple maths, adding services like day programmes to family arrangements is more than a quantitative increase in support; there are configuring effects that require ongoing evaluation and tinkering to ensure that the resources added are helpful.
Further research on day programmes that attends to the processes of their use, the specificities of design and their integration with care infrastructures and family arrangements can help to inform practice in a meaningful way. In health and social care policy, day programmes are positioned as a contained version of the community operating as a satellite of the health-care system. Within this positioning, their situatedness within the broader care infrastructure is often not attended to. As a result, the limitations and possibilities of day programmes and their role in working out a good life with dementia in the community are neglected. A more intentional connection to the broader infrastructures that they articulate with is needed. Moving beyond programme walls to evaluate effects as they travel (or not) might help account for the challenges that both family and staff at day programmes consistently deal with in their attempts to provide good care within truncated networks.
Acknowledgements
We would like to thank the participants of the study for generously allowing Holly into their homes, social settings and workplaces over the course of the study. We would also like to thank Dr Mary Ellen Purkis for her helpful feedback on an earlier draft of this manuscript.
Ethical standards
This study was approved by the Health Research Ethics Board at the University of Alberta in Edmonton, Alberta, Canada.
Open access
