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4 - Negotiating everyday life with dementia: four families

Published online by Cambridge University Press:  13 May 2022

Christine Ceci
Affiliation:
University of Alberta
Mary Ellen Purkis
Affiliation:
University of Victoria
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Summary

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. Again, we want to underline that our purpose here is not to compare these different practices for the purposes of saying some are better than others when examined against a set of standards, but rather, to allow the family's and formal care practices to diverge.

This notion, drawn from Stengers’ (2019) work examining comparison as a matter of concern, is not only a theoretical question we pursue in later chapters with a view to offering better ways for policy-makers and formal care providers to think about sustaining older people living with dementia.

Type
Chapter
Information
Care at Home for People Living with Dementia
Delaying Institutionalization, Sustaining Families
, pp. 65 - 88
Publisher: Bristol University Press
Print publication year: 2021

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