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This chapter explores borders, and the relations of helping that happen both inside and outside of these borders, and perhaps most important, about the ‘logic of the between’ (Cooper and Law, 2016, p 207) that works to constitute various and precarious thresholds between these locations. We start with an idea, in many respects rather obvious, that we cannot use a term like ‘help’ with preconceived notions about what help means – that it is not really known in advance what ‘help’ will look like for a particular family. As Büscher and his colleagues (2011) have shown, in the context of evidence that current formal care practices and policies often create rather than resolve problems for families, helpfulness must be rethought in terms of how particular ‘helping’ actions fit, or don’t fit, with ongoing family arrangements (Büscher et al, 2011, p 713; see also Lloyd and Stirling, 2011; Stirling et al, 2014; O’Shea et al, 2017; Stephan et al, 2018). Care for family arrangements draws us immediately to consideration of what is ‘between’ these and ‘other’ practices, and that is always something to find out about. In this chapter we develop this idea by drawing on Cooper and Law’s distinction between proximal and distal analyses to explore the question of helpfulness through looking at details – materials, knowledges, technologies, policies and people, and importantly, the relations made among all of these – to understand ‘help’ as an effect of complex processes that ‘take up, form and reform all these bits and pieces’ (Cooper and Law, 2016, p 214).
What ‘kind’ of community is demanded by a problem like dementia?
As aspects of care continue to transition from institutional to community and home settings, this book considers the implications for people living with dementia and their carers.
Drawing on extensive fieldwork and case studies from Canada, this book analyses the intersections of formal dementia strategies and the experiences of families and others on the frontlines of care.
Considering the strains placed on care systems by the COVID-19 pandemic, this book looks afresh at what makes home-based care possible or impossible and how these considerations can help establish a deeper understanding necessary for good policy and practice.
In Chapter 1 we explained how we intend to examine the ways in which families make arrangements in life when they are caring for a family member with a diagnosis of dementia. We described our approach as one informed by a relational logic where elements of everyday life take their form and effects only in relation to one another (Law, 1994, 2008; Mol et al, 2010; Moser, 2011; Pols, 2012). Approaching the topic of dementia from a relational stance means that we examine what Law and Mol (1995, p 274) describe as ‘associations’. Law and Mol do not limit the availability of associations just to human actors; they advance the possibility that ‘association is a matter not only for social beings, but also one to do with materials’ (1995, p 274). This means that in this chapter we can broaden our gaze somewhat to examine the context within which families arrange care for their family member diagnosed with dementia. And we can include people, offices, websites, documentation, national plans and even ideas that are operating with a relational logic that makes up dementia care within the location where our study was conducted.
So, while our interest throughout this research project has been on the families and their practices of caring for one of their family members diagnosed with dementia, we also knew from the beginning that formal health services operating from hospitals, clinics, medical offices and community health centres would play some part in those care practices. And these formal services themselves, as well as families so affected, are associated with those discursive associations setting out what dementia ‘is’ and what should, on a population scale, be done about it.
We started our book with a description of ‘traditional’ narratives for understanding the problem of dementia for our communities. We have already noted that these ‘traditional’ or common ways of thinking about policies designed to address the problem of dementia frequently frame solutions in economic terms. With growing numbers of people affected by the disease, and with limited institutional resources for meeting that demand, the home is figured within policy documents as a location best suited – that is, most economical from a policy perspective – for people living with dementia. Our first two chapters have created opportunities for us to raise questions about this common formulation.
In Chapter 1 we pointed out how traditional economic formulations framing the problem of dementia might actually be excluding other, less traditional, less common, but possibly more inclusive, ways of understanding the problem of dementia. The near-exclusive framing of dementia as an economic problem means that very little space is left to describe the thickness of problems (Savaransky, 2018, p 217) associated with living, everyday, with a diagnosis of dementia. In Chapter 4 we begin to explore this thickness of problems by introducing readers to the families who shared time with us to help us know better what everyday life living with a diagnosis of dementia is like.
But it is not only in everyday lives in homes where thickness can be described. In Chapter 2 we presented a ‘thick’ reading of practices associated with policies that constitute the home as the ‘best place’ for people living with dementia to receive care.
Wednesday is one of Marla’s regular day programme days. Ken tells me that he has been unable to use DATS [Disability Action Transport Scheme] (the transport provided) because it is difficult to ensure that Marla will be ready to go on time – getting up and dressed is a struggle some days, and if Marla isn’t ready, it’s a problem. Plus, he was never sure exactly what time the van would arrive, and having her dressed for outside and waiting was an issue. I am going with them to the day programme because Ken thinks it is important for me to see what they do there and how important it is for him that she goes there (she now attends three days/week).
I arrive at the house at 8:40 – Ken has asked me to arrive early because he wants me to ‘see’ what getting ready to go out is like. I arrive, the house is very tidy, breakfast dishes have been washed and put away, radio is playing music, both Ken and Marla are dressed. Marla is wandering around the house.[…]
He finds Marla and says ‘Let’s go do your hair’ and takes her into the bathroom. She resists his brushing her hair but then they decide she looks nice. He then helps her to brush her teeth and is concerned when she swallows the toothpaste; he tries to get her to rinse her mouth and admonishes her about the toothpaste. Then he tells her she ‘looks good, really sharp’. He seems to go back and forth between gentleness and sharpness.[…]
In the preceding chapters, we have taken steps along a pathway towards the central aim of our study. We have been laying some groundwork, offering context for the ways and places that the families and the arrangements they make for living with a family member who has been diagnosed with dementia intersect with other pathways followed by case managers, therapists and care workers in their daily work of offering specific care practices to others in the wider community.
We have always been most interested in the arrangements worked out by families in the context of caring for someone living with dementia. The preceding chapters have illustrated that these arrangements are not made solely by the families, but rather, they bear traces of influence from the formal care system at many points of intersection. We have focused on the work of those who have a formal role in supporting people living with dementia, not with a future goal of clearing the influence of those formal supports away from the practices of the families; instead, we take the position that these influences all become integrated into the everyday practices of the families.
And yet, as we have noted, while all actors in these stories may have a common interest in sustaining care at home, they may not hold the same interests in common. We believe that it is possible to tease these interests apart to better understand how they operate similarly and differently across unique family circumstances, and that the opportunities for expressing such understanding are enhanced by describing the practices of these various parties.
In Chapter 5 we started a process of thinking through divergent practices, those of families and formal care providers, as well as some of the kinds of relations family practices must make with ‘other’ practices. In thinking through this question of relations between practices, it is impossible not to see, and discuss, the effects of the ‘patterning’ of dementia in family practices. In this chapter we focus more specifically on this idea of patterning, exploring how each family needed to make relations with the dominant dementia discourse – specifically, the changes each needed to make to remain ‘in sync’ with the idea of the ‘dementia trajectory’.
As has been well established in multiple disciplines, medicine serves a powerful organizing function in people’s experiences of health and illness (see, for example, Armstrong, 1982; Gubrium, 1986 Cohen, 1998; Dillman, 2000; Beard, 2016), with the biomedical gaze an exemplar of a way of seeing that looks for patterns, that systematizes in order to know and to intervene (Foucault, 2003). Identifying and ordering ‘disorder’ through the concept of disease, biomedical discourses and practices also direct how such disorder should be perceived and acted on (Dillman, 2000; Holstein, 2000). An important element of this influence is, as Foucault points out, the anteriority of the medical gaze: ‘one now sees the visible only because one knows the language’ (2003, p 140). The analytical structure, he suggests, precedes the picture, providing knowledge ‘not of what “is” but of the anteriority of ordering’ (2003, p 140).
In this chapter we analyse a theoretical and practical problem of longstanding: what are good ways to think about how family care practices and those of the formal system relate? Few would disagree that the ways that families and formal care systems handle daily life are different, with, as noted in Chapter 1, extensive research efforts undertaken over many decades addressing issues that arise from these differences (see, for example, Twigg, 1989; Bond, 1992; Lyons and Zarit, 1999; Zarit et al, 1999; Ward-Griffin and McKeever, 2000; Wiles, 2003; Büscher et al, 2011; Stephan et al, 2018; O’Shea et al, 2019). Yet, despite a long interest in, and study of, relations between family care practices and those of the formal system, difficulties persist, with families reluctant at times to use services that are meant to be helpful or using these supports without experiencing them as helpful.
In this chapter we don’t try to ‘solve’ this problem but rather, we try to understand it differently by following the experiences of the Cruz family, introduced in Chapter 4, and specifically focus on those events in our Field notes that show differences between the family’s care practices and those of formal systems. The aim is to consider what, in these specific situations, may be at stake, what types of relations are being enacted and what types of relations might be helpful. This leads us not to ‘general rules’ stipulating what should be done, or broad claims about how these differing practices should relate, but rather, to a different, more complicated and more located sense of the problem.
We start this book in a ‘traditional’ way, outlining the ‘problem of dementia’ as it is commonly thought to exist, and as it frequently appears in policy documents – a strategy that provided a convincing and familiar rationale for our study. What follows here constitutes, in some sense, the ‘facts’ of the matter, defining a context that works to make dementia, in its many manifestations, a matter of strategic concern for health service planners and policy-makers. So to begin somewhat starkly, a familiar argument goes like this.
In Canada, as in many nations, population ageing is accelerating, and with this trend there is an increased prevalence of chronic diseases such as dementia. The need to provide responsive care services for older Canadians, particularly those living with Alzheimer’s disease and other dementias, is arguably the biggest challenge in healthcare policy and practice today. Alzheimer’s disease and other dementias are among the most feared problems of ageing (CIHR, 2013, 2017; Lock, 2013; Latimer, 2018), as well as being the most significant cause of disability in those over the age of 65, placing a ‘long-term progressive burden’ on those who care for them (Dudgeon, 2010, p 3). It is estimated that 500,000 Canadians are living with dementia, a number that is anticipated to increase to over one million as the population ages over the next 25 years.
Currently, more than half of those diagnosed with a dementia are living at home with family and community support. By 2038, this proportion will increase to 62 per cent, or approximately 510,000 Canadians living at home with moderate to severe cognitive impairments (Dudgeon, 2010).
Building Capacity for Meaningful Participation by People Living with Dementia is being undertaken in Canada under the umbrella of the federally funded Dementia Community Investment. This four-year Building Capacity Project (2019–23) models a bottom-up cross-sectoral approach to building and connecting community-based activities that provide meaningful opportunities for people with dementia to remain active and socially connected. In this chapter we examine how the project is designed to build practical knowledge from the ‘ground up’, working closely with people who are most directly affected by the issues (especially those with lived experience of dementia), and taking local context into account using methods of asset-based community development and developmental evaluation. Most importantly, this work is being carried out in two very different places, which is allowing us to both leverage our unique strengths and discover the common principles underlying successful approaches that can then be scaled up more broadly, including nationally. Ultimately, the aim is to create and share new knowledge about how this kind of ‘grass roots’ approach can lead to sustainable change at individual, community and institutional levels to promote social inclusion, raise awareness and reduce stigma around dementia.
Recognising the importance of place in this project, we begin by describing where the work is happening. This allows us to make explicit the significance of local contexts, be they geographic, social, economic, cultural or political, which are intrinsic to how we are developing and evaluating the various activities and programmes.