Abstract
Globally, day programs are increasingly proposed in policy as one way to address the support needs of people living at home with dementia and their families. Day programs represent a kind of space that can meet multiple interests and ideologies concerned with sustaining care at home for people living with dementia. In this paper, we draw on findings from an ethnographic study of how day programs work as care in the community for people living with dementia to argue that day programs’ ontological status in research as a “simple location” of care contributes to the ambiguous outcomes and limited evidence available for improving their design and delivery. Using one program as an illustrative case, we demonstrate the multiplicity of a day program and the ontological politics through which the potentialities for care emerge. Robert Cooper’s proximal analysis of organizing’s and Annemarie Mol’s work on ontological politics inform this analysis. Of note in this analysis are the different enactments of a day program and their modes of coordination. We show when these enactments hang together well and when they do not and consider the effects of these politics for care. Of particular concern is how some versions of a day program are easily displaced by the interests of administrative versions and managerial logics. We argue for approaches to research and planning that acknowledge the “day program multiple” and precarious nature of care.
Day programs are increasingly proposed as a solution that can improve and expand support options for people living at home with dementia (Danish Ministry of Health, 2019; Government of Ireland, 2018; Government of Spain, 2019; Public Health Agency of Canada, 2019; World Health Organization, 2017). In the past 70 years, occupation and utilization of these infrastructural “spaces,” located somewhere between acute care institutions and the home, has become common practice, adopted in many countries for a wide range of medical, rehabilitation, and mental health purposes (Harder et al., 1986; Weissert et al., 1989). Harvey and Knox (2012) explain that a material effect of such infrastructure is to bring together citizen expectations and political ideologies to generate promises of social good. To policy makers, who are often guided by the biomedical discourses of risk (Clarke, 2000; Mitchell et al., 2020) and the legacy of activity theory (Katz, 2000) that guides much of the organization of dementia care, the apparently separate and contained spaces of day programs located between home and hospital hold certain promises. Here, the promises of space for respite “away” from the home, an imagining of a supervised and engaging place where people living with dementia might participate in social activity, merge with the desire to delay the costs of institutionalization for as long as possible. These promises of day programs enchant, despite over four decades of ambiguous research findings with respect to the effectiveness of these spaces/places for meeting these diverse policy goals, whether that be providing caregiver support or respite, social inclusion for people living with dementia or generally working to sustain care at home for people living with dementia (Dabelko and Zimmerman, 2008; Edwards et al., 1980; Fields et al., 2014; Gaugler, 2014; Gaugler and Zarit, 2001; Maayan et al., 2014; Maffioletti et al., 2019; Manthorpe and Moriarty, 2014; Måvall and Malmberg, 2007; Nies et al., 1991; Tester, 1989; Tretteteig et al., 2016). The ambiguous results of much of this research are perhaps not surprising, as complex health interventions and their multiple effects and contexts often challenge researchers using traditional methods of evaluation. Of concern, however, is that limitations in the ways that day programs are commonly conceptualized, designed, and evaluated set the conditions of possibility for what they can become and how good care can be achieved through them. This paper addresses this prior problem by first examining ontological issues underlying day program research, that is, what day programs are thought to “be,” and then offering a proximal analysis of a particular day program to show the “day program multiple, the related ontological politics and the limits and possibilities for care that they create.”
Anyone observing the happenings of a day program for people living with dementia would quickly realize that these are not simple spaces of containment. Multiple practices, spaces and times are being enacted at once as people living with dementia and family caregivers are attended to and engaged in particular and sometimes competing ways. In addition, the programs themselves are not definitively bounded; they are situated in relation to other services, the spaces of the home and the community, as well as broader discourses of aging and health. Given this complexity, key figures in day program research have argued that the limits of the evidence base for day programs is not so much due to a lack of research, but rather may be related to inadequate theorization concerning what day programs actually are and how they work for people (Dabelko and Zimmerman, 2008; Gaugler, 2014; Zarit, 2018). Despite the permeability and multiplicity of the relations involved, much research to date portrays day programs as a kind of “black box” of services, delivered in whole, with the complexity of the processes and practices involved much less visible (Dabelko and Zimmerman, 2008; Gaugler, 2014; Symonds-Brown et al., 2021). Presenting a program as a “finished product” is not an unusual tendency in health and social care research but leaves unexamined and under-theorized the potentialities through which spaces like day programs emerge (Spoelstra, 2016) and the multiplicities of these emergings.
Cooper’s (1998) ideas on organization and organizing’s are useful in thinking beyond the finished product of a day program. Cooper, an organizational theorist, argued that the common approach of viewing spaces like day programs as solid entities or “organizations” only allows us to see certain effects. Cooper asserted that shifting from a preoccupation with the distal idea of the “organization,” that is as fully finished and stable, to a more proximal analysis of “organizings” allows for new understandings of relations and their effects. Referencing philosopher Alfred North Whitehead’s ideas regarding “the fallacy of the simple location,” Cooper pointed to specific and flawed assumptions that enabled organizations to be studied as fixed and stable entities. Whitehead’s (1920) argument was that conceptualizations of “simple location” relied on an error in logic where space and time relations were understood as fixed and independent of any other relations. Whitehead challenged this assumption by drawing attention to the processual nature of the world and its phenomenon (Bender and Holmes, 2019). Using these ideas, Cooper and Law (1995) encouraged the study of organizations as “organizings” that would become more visible when a proximal standpoint was adopted. In this paper, we argue that learning about day programs through this proximal view of organizings shows a multiplicity of day program enactments and perhaps more important, the necessarily different logics enacted to accomplish their coordination. This is not purely a theoretical exercise—there are practical consequences for how the politics of these different versions of day programs are worked out. As Mol (2002) has shown, how things come to be is intricately related to how they are done and suggests that attention to multiplicity can reveal the politics at work and open up taken for granted ideas of what might be possible. The different enactments of a day program and their interactions with each other matter as they create possibilities and limitations for what the program can be for people living with dementia and their families.
To make this argument we use findings from an ethnographic study of day programs for people living with dementia to show the multiple, not always congruent, versions of day programs that are enacted through practices of policy, planning and day-to-day activities. Our intention is to follow Robert Cooper’s lead in “moving beyond” investigating day programs as simple locations, and through attending to proximal organizings, show something of what is at stake within multiple enactments of a day program. Of note in this analysis is attention to “the day program multiple,” that is, the different versions of a day program that are enacted within different practices. We work to show when these versions cohere and when they are noncoherent, and consider the political and normative challenges for care created by how the goods of noncoherent enactments are held together or apart (Law et al., 2014).
About the study
This analysis is based on data collected during a multi-sited ethnographic study of how day programs work as care in the community for people living with dementia at home. The study was conducted in a midsize, western Canadian city. Data was collected by the first author over a 9-month period between 2019 and 2020 and included weekly participant observation at two different day programs and at the homes of four participants living with dementia, key informant interviews with program managers and a dementia policy planner, and document analysis. The study received ethics approval from the University of Alberta Health Ethics Research Board (#Pro00086731) and all participants and guardians gave consent for interviews and observations. The use of field observation notes, interviews, and analysis of documentary sources provided overlapping materials for the development of detailed descriptions of the practices of the families and of the programs. The analysis involved iterative reading and re-reading of these data sources informed by theoretical readings on care practices, the tracing of observed practices and their relations, modes of ordering, as well as exploration of the normativities shaping these over time and space. Using a material-semiotic approach to studying care practices brings with it certain assumptions about care. Rather than an affective notion or task, care is seen as a socio-material accomplishment enacted within relations of actors that include people, things and ideas (Mol et al., 2010). Broadly defined as “those practices oriented toward improving or stabilizing the situation of things or people cared for” (Ceci et al., 2017: 57), care is understood as situated and particular to the practices in which it is enacted (Mol et al., 2010). Thus, in this analysis, we maintain care as an intentionally loose or open concept (Ceci et al., 2017) and work to trace care empirically through the different practices of the day program in which it emerges. As such we pay attention to the goods that are being strived for in particular day program care practices, as well as other orderings of practices that seem to support or interfere with that care.
Early in the fieldwork and ongoing analysis, the first author noted a difficulty in understanding what was going on at times at the day programs, the nature of the activities seemed to frequently shift in their focus on what was most important. At other times, the staff’s accounts of the care they were trying to achieve for the people attending the program seemed in sharp contrast to the activities they were actually performing within routinized practices. While this sort of non-coherence occurred through the daily routine of activities, the disconnect seemed most obvious in staff meetings concerned with ongoing administrative changes in the programs that occurred during the 9 months of the fieldwork. Reorganization of administrative intake procedures and planning for the implementation of a new computer waitlist program were events that highlighted the unsettled nature of the program’s care practices, and the risks involved when the effects of this precarity were not recognized. These observations drew us to try to understand how multiple versions of the day program were being enacted, and importantly how they were related and with what effects. In this paper we draw on an analysis of observations of care practices at 1 day program, interviews with those involved with the day program administration, program documents and the provincial dementia strategy policy, to articulate an understanding of the “day program multiple.”
Versions: Day programs from distal to proximal views
Beginning the exploration from what Cooper and Law (1995) describe as a “distal” position, likely the most recognized version of a day program is that of a somewhat generic group of people gathered in an interchangeable space. This version sits in the background of many research articles, while the effects of day programs on caregivers, service utilization or the person living with dementia are placed front and center. Here, from a distal view, these effects are presented as if they simply exist as part of the day program’s assumed stable existence, situating the day program as a “thing” that doesn’t require further definition and is independent of space or time. For example, day programs appear in the Dementia Strategy for Canada (2019) in a shaded text box titled “Respite Care.” This description is located in a chapter specific to caregiver supports and resources: Adult day programs can bring respite to caregivers, as they provide an opportunity for the person living with dementia to participate in activities and socialize with others in ways that do not require the usual caregiver to be present. (Public Health Agency of Canada [PHAC], 2019: 40)
Here a day program is enacted as a discrete space, a location away from the usual caregiver, part of something Whitehead (1920) would call “simple location.” Here, in this policy, how a day program’s space is created and maintained, and how this connects to a respite experience requires no explanation. The distal outcome of respite simply exists on its own through the very “essence” of the space of the day program. Of course, this distal version works in useful ways; it travels well and is easily translated elsewhere into things like research articles, policies, health care budgets, or community resource manuals. At the same time, this stable “easy to travel” aspect of the policy versions of a day program can mask the more active arranging work that is going on within the policy.
“Hanging together”
More than a portable document, policy works as a form of “distributed doing” that both creates and is shaped by relations that align things, people, and resources together or apart in different ways (Gill et al., 2017: 3). Thus the relations enacted in policy can enact spaces in different ways. For instance, the provincial Dementia Strategy and Action Plan (2017)shows the distal version of a day program as respite care alongside another enactment of a day program. A text box that includes a caregiver quote describes a day program as a form of social engagement for people living with dementia within the community: If I could describe my wish list, I would ask for five days of the adult day program every week because when he is there he is with a group of men, he watches and he knows he is with other men. They say good morning to him; otherwise, it is just us in our home. (Government of Alberta, 2017: 15)
This social engagement version of a day program brings in new relations and practices of a space that affords a particular kind of life for people living with dementia, one that is in relation to peers instead of an alternative of being at home with no activity and few people. Here in the action plan, associations are being made (Moser, 2005); people living with dementia are associated with a single caregiver, spaces are being defined and the day program is aligned as apart from home. But how does this fit with the other version of a day program? A day program of a respite space away from home and one of social engagement are being associated together. These two versions of day programs do not exist as dissociated fragments of a whole; instead, they exist in relation to each other “hanging together” in different ways at different times to create a sort of coherent singularity (Mol, 2002). It is in this policy practice of arranging things to hang together and apart that realities are enacted, and particular lives are lived (Mol, 1999; Moser, 2005). Through this coordination, the day program remains one thing, a sort of composite space, able to offer the goods of both respite to caregivers and social engagement for people living with dementia. But this coordination is not a “fait accompli”, it requires ongoing work (Mol, 2010), and this sort of coherent space is harder to hold together in the implementation of the day program where it becomes evident that there are other versions with competing goods also at stake.
From policy to planning: A “piece of the puzzle”
In discussion with a government health policy planner in charge of planning care in the community for people living with dementia, a new version of a day program comes into being and the coordination among the day programs changes: I see them [day programs] as a piece of the puzzle when we are talking about the needs, not only of the person living with dementia, but also the caregiver family system around the person. Day programs often have different benefits to both of those groups. We hope they benefit both simultaneously, sometimes they are straight respite and the person with dementia may or may not want to participate but they need to because the caregiver needs a break. Ideally in my view, it is that they are also providing a benefit to the person living with dementia. That is kind of the best fit. I would see day programs as one of a collection of options to provide respite. (Key Informant Interview, February 25, 2019)
In this comment the policy planner includes both of the previous versions of day programs, but unlike in the policy, the coordination of the two is not as simple: one seems to be more predictable than the other. Respite is assured, but social engagement may be optional. The planner identifies the central problem addressed by day programs is caregiver respite, something essential to strategic agendas of sustaining care at home. The manager accounts for a “best fit” situation where both respite and social engagement occur. For the times when it does not, she explains away the importance of the person living with dementia’s desire for social engagement as sometimes irrelevant if the caregiver needs respite. This is yet another version of the day program: the day program as a resource. This version of a day program is one that can be packaged with other resources and allocated out to people by health care systems, enacted as a “piece of the puzzle” and connected to other services. The orderings of broader discourses of health are evident, social engagement and caregiver relief can be packaged into a unit of delivery and dosed as a treatment. In this resource version of a day program, different relations are established, as well as new goods to strive for and new promises of what the day program can be.
The “mattering” of day programs
Unlike perspectivalism, the argument is not a simple question of a how a singular day program is perceived from different perspectives, or with different agendas in mind. Rather we are suggesting, following Mol (1999), that the day program is itself multiple. Here the multiple versions of a day program are being done in different practices that make up policy and implementation. These are non-coherent practices (Law et al., 2014) and as they come together the coordination of the different goods of these versions of a day program begins to happen and their normativities emerge. For example, at times social engagement as a good is coordinated with, and included in, the respite version, but this relation is not stable, it may not always be there. In this case, rather than the versions existing side by side in harmony, there is a priority given to one over the other. The good of respite remains but the good of social engagement is allowed to fade away. Mol explains the multiplicity of these practices of mattering as ontological politics, where what comes to matter most reveals the politics at work in making worlds. As she argues, what comes to be comes to be because it is performed, and these realities may clash at some points (p. 81). Thus attention to multiplicity is an important act or a type of intervention because the different organizings of a day program do not relate by chance. As Moser (2008) observes, attending to this “mattering” can help us understand the possibilities for life with dementia that can be lived through “things” like day programs. How these organizings of day programs are coordinated, in the sense of making some versions visible and some obscured, is world-making for those involved (Moser, 2008; Setchell et al., 2018).
Versions of a day program described thus far, those enacted from a planning perspective, enact normativities for the day programs themselves, the people who use them, and the broader community resources. In the instances described above, the day program is primarily for caregivers and secondarily to meet a need for people living with dementia’s social engagement, suggesting that a strategic agenda for sustaining care at home through caregiver respite holds greatest power here. While social engagement of people living with dementia is acknowledged as important it competes with both economic discourses of sustainable futures and biomedical orderings that approach life with dementia in terms of risk, disease burden, and containment (Latimer, 2018; Mitchell et al., 2020). As these versions of day programs are coordinated, subjectivities are created: particular types of people with particular roles and needs come into being; some needs are deemed essential; and some are not. Named as “one of a collection of options” for respite, relationships are formed between day programs, these other “options” and in these relations the problem of dementia becomes something to be managed (Mitchell et al., 2020).
Day programs in practice: Moving toward proximal views
As one of a collection of options, day programs are figured as a discrete unit mobilized to solve a particular type of “puzzle”: respite. While local, these relations can travel. The messy transfer of these enchanting policy ideas to practice is, of course, not unique to day programs but does provide an opportunity to consider how versions of a day program as conceived in policy might connect and disconnect from the versions enacted in the day-to-day practices of an actual program. The practical consequences of connecting and disconnecting relations and subjectivities are evident in a different discussion, this time with a day program manager who finds that it is not always easy to manage the day program being different things for different people: One hard thing that we all struggle with. . . [is] clients who are nearing the end of our ability to manage them and what is that end, and you know. . .what is to justify and knowing how difficult it is for the caregiver and not wanting to deliver that bad news. . .. and that is a tough one. . .just that. There does come a point where they are sleeping all the time. . . I think right now we have someone who does a lot of “do we still bring them, do we not bring them,” and yeah, sometimes what is the goal of the program? Is it truly just respite for the caregiver, so it really doesn’t matter if they are engaged if they are with us? Or do we all want them to be engaged and when they can no longer engage, is then that a discharge point? Or if their bowel incontinence gets to be too much, which in the past has been an issue as we only have so much staff time to do it. (Key Informant Interview, January 28, 2019).
It is evident that in the day-to-day practices of the day program the “simple location” version of the day program is not so simple; there are relations that need to be coordinated between the needs of the people attending, the staff and the supplies and time available, that reveal an organizing that is neither simply respite nor social engagement. The practicalities of managing resources, people and materials relate in different ways, but the day program is again enacted as a space for some people and perhaps not for others, as possibilities for effective management compete with those prior versions of the day program as available for respite and social engagement. This competition has effects on defining the limits of the day program, and it creates specific and normatively different kinds of relations between staff, the family and the person living with dementia. Here broader biomedical regimes of treatment and successful aging work within and alongside the day program practices to define the limits of what attending a program should look like. Staff must justify the delivery of bad news; they must decide what is too much to handle—sleeping all the time or incontinence. There is a limit to the dependence that can be accommodated; there is little room here for evidence of the fourth age (Higgs and Gilleard, 2014). Within these relations, both the limits and possibilities for the program are created.
Treatment or rehabilitation? Versions of routine
Attending to the work of the staff at a day program reveals the tensions between yet other versions of a day program and the work that must be undertaken to coordinate them. The clients of the Oak Room are a group of 8–9 people each day, all with dementia and a range of memory and verbal capacities. Three women are the regular staff in this room—two recreational aides and a recreational therapist. The staff are all outgoing, and the noise level is high at this program, with many side conversations going on, the staff often joking, teasing each other and clients. The clients interact in various ways, sometimes directly through conversation and care for each other or sometimes only as familiar faces helping them orient that they are in the “right place” as they move around the space of the program.
Each day in the Oak Room is organized through a routine schedule of activities that include various exercise and sport-like activities, crafts, cognitive stimulation activities and discussions, as well as lunch and snack times. The staff’s work at the program is predominantly focused on planning and facilitating each activity while responding to the individual needs of participants. At this program, the staff explain, these activities serve two purposes: to provide an opportunity for social interaction and to maintain the functional skills of people who seem to be at risk of decline due to dementia. In the daily activities of the program, the staff were observed to arrange activities around several versions of social engagement. They would settle people at small tables and selectively arrange who gets along best with who. The activities they organized almost always involved interaction. But the activities themselves did not always lend themselves to social engagement as much was dependent on the tastes and abilities of the participants. But the staff would tinker with the crafts and exercise games and often found ways to engage people. For instance, Peg, a woman who typically scoffs at the idea of crafting, is included in helping staff with sorting supplies or preparing material but isn’t pushed to participate with the craft. Roy, a former farmer, is engaged with more tool-like tasks such as painting or sanding or pouring cement into moulds.
At times the adaptation is successful in keeping the person engaged, while at other times there is no adjustment adequate enough to maintain the person’s involvement. For instance, each day a “brain game” activity appeared in the schedule with a new task—sometimes math, sometimes memory or spelling related, and each time the group would splinter into individuals with their unique interests and challenges of memory, motor, and sensory deficits. These cognitive stimulation activities were the most difficult to engage clients with, but the staff would persist. And while the people participating seemed to find ways to complete the activity and to help each other out, there was limited enjoyment expressed in the activity. In fact, it was not unusual for people with limited verbal abilities to leave the room or become agitated during these times requiring more work by staff to manage them. It seems these sorts of activities are only partially connected to a day program of social engagement, and their continuing presence in the schedule seems to be associated with another organizing: a day program of treatment.
The echoes of the rehabilitative origins of day programs seem loudest when versions of day programs as treatment are attended to. In conversation with the program recreation director, we learn that the possible goals and goods of the program are often limited by wait-times and who is accessing the program: “It is just a shame that because of the wait-times for the program we get people so late. . . by the time we get them it is almost always too late to make a difference, they are too far gone” (Fieldnotes, May 16, 2019). Yet despite somehow seeing clients arriving “too late,” the recreation director also enthusiastically plans daily events and activities: organizing outings, bake and craft sales, special luncheons, and family teas—activities that appear more oriented to enhancing the quality of life rather than preventing functional decline. This tension in discourse and practice suggests that the day program’s situatedness within a healthcare system focused on treatment and cure may leave little room for the narrative work required for program staff to talk of people who are experiencing progression of a non-curable disorder or even the inevitable decline of aging bodies (Jerak-Zuiderent, 2015; Mitchell et al., 2020). Despite working hard to socially engage and create a community in the day program, the powerful template of health care as treatment and rehabilitation undermines the work that the staff do in their day-to-day practices of meeting people where they are at. But the treatment version of a day program lurks here, making the staff work hard at accounting for what they do in a way that can fit within the “standards of good care for health and well-being” (Jerak-Zuiderent, 2015: 429). This means that certain practices of the program are oriented toward neither respite nor social engagement, but rather the monitoring of health outcomes or intervening to slow cognitive decline with activities like “brain games.”
When day programs clash
At times the goods of these enactments of a day program are compatible or at least made to be so—helping people living with dementia feel included, possibly stimulating their minds and having families get a break. But it seems there is another endpoint present that isn’t always as compatible or easy to tinker with. Day programs don’t exist in a vacuum, and for the health system, a day program as a resource is enacted in versions that can be allocated, quantified and translated into “spaces” in an administrative database. Within this organizing of a day program as a resource, an ideal of “fair access” orders the imaginings of the program. If the program is for caregivers to get a break, it needs to be accessible and to be a fairly accessible resource, more caregivers need to be served. Yet even as this enactment of the day program clashes with other versions, its goods predominate, overwhelming the goods of the other versions, and making it seem necessary that sometimes people’s needs must be compromised. This clash becomes apparent when the day program manager brings a new admission policy to a staff meeting.
We have 24 people on the main room waitlist and 27 for the Oak Room. . . this is a huge waitlist and with those numbers, for the Oak Room it may mean some of those people may never get into the program which is sad. . . We may need to see about changing our processes so that initially people are accepted for once a week and then add extra days as appropriate.
Some people have been moved off the waitlist by referring them to a dementia-specific day program for the Saturday program where there is room but the big issue is that the senior bus doesn’t serve these sites. The bus serves a few main spots in the city but not these, so transportation is a problem.
The manager then suggests that the staff consider if perhaps there are people in the program that don’t really need their services and could be discharged. For instance, those that live in assisted living settings with in-house recreation programs.
There is no difference (in assisted living) than living in a home as far as activities, but you don’t qualify for respite services there, and there is something about leaving the building to go out to a program.
It’s a better program in that they get more attention.
This is just proof that we need more programs and that this is the best way to take care of our seniors especially to have nursing/OT/PT in the house not travelling around home to home which costs more money.
Yes, I agree but until more money arrives and new programs magically created, we have to do something. . .
Maybe having 1 day a week is okay for some poor attenders because maybe then they will come for their 1 day.
We have to deal with the holding of spots too. Two weeks in hospital then you are put back onto the waiting list and can be an urgent readmit when you get out.
But how do we do an urgent readmit if we fill their spot?
It is hard for us to set limits with the family and tell them they have to wait for the next spot to open up. We are emotionally attached, and we know how much they need it. So a formal written policy may help us do this better or if we can draw in (manager) to have these hard conversations.
The manager then tells the staff that the other program managers from the region are meeting in December and she has asked all programs to consider what the implications of this change would be so they can plan. The staff begin to brainstorm some of the implications such as calendar changes, crafts that will take longer to complete. Agnes the recreation therapist mentions that in the Oak Room they will just choose fewer things to do so it can work out, events like the Harvest Dinner or summer BBQ will be affected, “everyone won’t always get everything” (Field Notes, October 9, 2019).
The walls of the program are less solid now with obvious relations from the outside, including other versions of the program, seeping through. The bus routes, assisted living facilities programs, in-home respite policies, administrative priorities, and limited government funding seem to actively constitute what the program can be in this meeting. Everyday practice versions of the day program are shifting to take account of new relations contained in an administrative database and through these new relations, new enactments are made, and others fade away. The “spots” of the administrative program are an abstraction of the program space, and while abstractions may be necessary to think with, they should be considered critically for the ways they connect and disconnect relations. Within these new relations, the version of the program as a resource shifts the values of its distribution and this has placemaking effects. It is no longer a personal resource space for people living with dementia and their families, it is a scarce resource of the system to allocate. The day program as a resource of highly sought after “spots” of care is front and center and while aligned with a day program as respite, it is held apart or disconnected from a day program as social engagement that provides a chance for people living with dementia to “get out” from home and be attended to and “stimulated.” Expected use of the program becomes shaped by different goods; regular attendance is most important—quantity and consistency of this attendance comes to matter most. In this version there is no room for illness or vacations by the clients as the program is accountable for not just who is using their “spots” but how. The solutions of a waitlist are also creating new relations between the staff and the clients and the manager. There are managerial practices at work here shaping how the problem is conceived, how the staff have a role to play in the solution, with both staff and clients enrolled in the managerial strategy to be responsible for the proper use of a day program that is best understood as a resource (Callon, 1984; Purkis, 2001).
The world-making effects of this organizing are apparent in the enactment of a day program as a resource configured as interchangeable “spots” to be allocated in a computer dataset. This need for interchangeability also shifts the identities of the people using the program. There are “types” of users now—those that are good attenders and those that are not. Families’ requests are shifting into demands that can be directed to the manager. Activities will shift to allow for the lack of continuity, emotional connections with the family will be mediated by more explicit rules, and the manager will have the job of “hard conversations.” As Law (1994) points out, the relations between the modes of orderings at the meeting and what is coming to matter most tell a political story about values and their limits. Everyone won’t always get everything.
The day program multiple and precarious
Three months later at a staff meeting, the manager updates the staff about the latest plan for the waitlist system. This is a new computerized referral management system that will manage intakes, the program is called “Pathways.” It will take referrals from homecare and match profiles to open “spots” and then send information of the “top 5” referrals matched to the program when a “spot” is open. This means that the nurse will no longer have a “fat file” of paper-based referrals sitting in a waiting list pile on her desk and that the program will only get a referral when a “spot” is open and the person is ready to start. The manager emphasizes how this will save time and “only send you people who are ready to start” (Fieldnotes, January 15, 2020). The staff agree that this is often a problem, people often aren’t ready to start when a “spot” opens, and it can take weeks to figure this out. The manager also mentions that this waitlist program is a more modern information system, unlike “Charttech” (the current system used by homecare), so it is easy to use and will integrate with CareNet (another system-wide information system being gradually implemented across the health region). The manager explains new admission practices that will be instituted; the information system will decide who comes to the program and will prioritize referrals for people coming from the hospital and those with high caregiver needs first. Part of the change is also that each person will be given only 1 day for the first month to see how they fit with the program and then they will be waitlisted for the second day.
It’s less paper for sure but a change is a change. . .so it will take some getting used to.
The staff ask if they will be able to decide which area the person is going to (referring to both the medical rehab and cognitive impairment tracks of the program).
It will make no difference for Mondays. (Mondays are a day for socially isolated seniors, the other days are for people needing physical rehabilitation or with cognitive impairment)
Dementia doesn’t really matter unless less there’s a lot of medical needs.
I think it may be helpful that the decision-making about days is done by the program because it can be so hard to respond to the different needs of the families—so if it’s just decided on, it will be easier to follow. (Fieldnotes, January 15, 2020)
Here in this meeting through the organizings of staff roles, paper, waitlists, and computers, the actuality of the day program begins to shift again (Spoelstra, 2016), revealing its impermanence. With the new practice of admission, there are new connections and disconnections being made between the versions of the day program, new coordinations, new politics, and normativities. The work of the staff’s triaging of referrals is being relocated to the computer’s priority system. But there is new work for the staff in learning to use the software. The relations with the other services are shifting too, the day program has been relocated from homecare to transitional living; therefore, patients transitioning from the hospital will be the priority rather than those at home. Patients’ reasons for attending have become medical categories and some categories like dementia “don’t make a difference” to the smooth running of the system. Here the goods of other versions of day programs, such as respite, social engagement and treatment, are fading quite a bit as it seems the need for a day program may be determined by the patient’s spatial location within the healthcare system rather than caregiver or patient needs. Requirements for the patients to be “ready to start” seem to excite the staff, but what this will mean to people on the waitlist remains to be seen. All of this information is delivered to staff through enrolling them in the efficiencies that will occur with less paper, more modern integrative systems, and patients who are “matched” and “ready,” centering these factors as the problems that need to be solved. Over the 9 months of observing the program, there was a feeling of the ground shifting beneath our feet in each of these waitlist meetings. It was difficult to see how the program as we knew it would continue to exist within this new administrative system, revealing our own tendencies toward assuming stability and coherence.
In these meetings a new coordination of the different versions of the day program occurred through the reorganization of what was made present and absent (Spoelstra, 2016), language changed, patients and families seem to recede, replaced by managerial processes. Within the administrative practices of a day program as a resource, this all makes sense: processes need to be efficient and “spots” can be easily counted, sorted, and filled. The partial connections of these spots to the other versions of the program won’t fit as easily and conflicts may result. The politics at work here reveal a certain normative stance to the “fair” allocation of a day program as a resource as most important compared to the other versions. The effect is one of possibilities for access, and at the same time, the possibilities of what will be accessed are becoming more limited, all of which will have world making effects for the people attending the program and their families, as well as the people working there. Contrary to explanations of health or social care organizational change that rely on conscious decision making of patient-centered professionals, the speed at which staff were enrolled with the new administrative interests of efficient intake systems demonstrates what Purkis (2001) observed over two decades ago in her study of homecare nursing: “individuals can be understood as being caught up in processes that may result in them working against their own interests” (p. 144). The visibility of this translation of interests and the shifting ground upon which the day program exists is the privilege of proximal thinking where what is captured is “always partial and precarious” (Cooper and Law, 1995: 239). It seems obvious now that the day program is not a simple location but a contested and shifting space made up through multiple enactments of day programs with competing goods. The day program as an unfixed, unstable thing can seem precarious and uncertain, difficult to pin down in text, yet it also opens possibilities and opportunities to take note of when the multiple enactments hang together well and when they do not (Tsing, 2015). Attending to this precarity of organizings is important. As Tsing (2015) reminds us, precarity is more the rule than the exception of our current times, and despite this, lives continue in ways that don’t always match up to ideals of progress. So the day programs go on, and lives are lived through the different enactments and because the relations are precarious, changes happen, not always for the better.
Considerations for research and practice
While this paper offers an analysis of a particular program there are insights here that may apply to broader ideas of how we think about care, and how formal care services such as day programs are conceptualized, organized, and studied.
Robert Cooper’s ideas of moving beyond the “practical useful” or the already formed actualities of organizations are helpful in guiding us to consider what current organizings of care are holding together and keeping apart. This is important because “care” is not an essential quality that just exists within a day program. Organizings of care matter to the potentialities that can emerge from them and the lives that are made possible within them. This is the important work to be done in how we study, evaluate, plan, and administer day programs and other forms of care for people living with dementia so that the potentialities present might be recognized (Spoelstra, 2016). Essential to this work is the understanding that versions of day programs are always multiple, noncoherent and laden with politics. The issue is not to “purify” day programs or to insist somehow on a singular “winning” version, as this would deny the messiness and multiplicity of day program care. Instead good care through day programs requires attention to ontological politics of what, in any particular situation, might be coming to matter most (Mol et al., 2010). As Setchell et al. (2018) explain, “multiplicity makes explicit—and thus opens possibilities for reprioritizing—the many interrelated ways of practicing that present themselves” (p. 181).
Everything being done at or with a day program does not necessarily cohere, but how these practices and their competing endpoints are coordinated can show the values at stake and whether the goods we are striving for are the ones we want. Research and evaluation approaches that capture this multiplicity and avoid smoothing day programs into simple locations are critical for building a rich knowledge base of examples of the particular coordinations of care that work. For example, the Meeting Centers Support Programme model, which is expanding across Europe, seems to offer new practices and organizings of day program care that could be worth exploring further in other contexts (Brooker et al., 2018; Dröes et al., 2006).
However, to institute new practices seems also to require an examination of how the differing goods of multiple versions of a day program—for example, social engagement, respite, treatment, or resource—have been coordinated apart or together in a way that seems to resist, or not resist, the domination of one version over others. As in the case explored in this paper, when day programs are adapted for any reason new relations and actors enact new versions and new coordinations result. Proximal analysis of these innovations and their organizings might help elicit better understanding of how good day program care practices are accomplished and sustained.
Recognizing the far from solid nature of a day program may also lead to more careful consideration of the changes implemented in the name of efficiency and administratively oriented practices. These are practices that come with alignments of power that can overtake the goods of other practices they exist with. This is not an argument against administrative practices in healthcare but rather an argument for careful attention to the coordination of different practices and their effects. The dominance of the administrative version of the day program over the others calls into question whether day programs as spaces of respite and social engagement can be maintained within organizings of efficiency and scarce resource allocation logics. Ultimately this particular analysis shows what is at stake when possible versions of a day program, that is, what a day program is able to become, are dominated by the question of what is the most efficient way to allocate it as a resource, rather than how a day program might contribute to a good life with dementia in the community.
Footnotes
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: open access publication from the Canadian Research Knowledge Network.
