Relations between formal and family care: divergent practices in care at home for people living with dementia

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. As noted previously, the question we are exploring is not a new one, but in this chapter we try to work through it in a new way. To do this we draw on Isabelle Stengers’ (2005a, 2005b, 2015 [2009], 2018, 2019) writing about an ‘ecology of practices’ to theorize the idea of a divergence in family and formal care practices that has implications for care. In Stengers’ view, what makes a practice diverge is also what makes it a particular practice; overriding these differences and imposing similarity, such as efforts to ‘professionalize’ family caregiving, can damage the practice so aligned.

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