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Preface

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

This is a book about care practices that become part of people's homes when at least one person living there begins to experience cognitive decline. The book pays close attention to these practices and describes them in detail – in part to find and consider reasons why patterns among those practices may be enacted in quite different kinds of homes and at different times, as well as to be provoked by those practices that are entirely unique. Our interests in care practices leads us to try to show how they work to help people living with dementia stay at home, for a time at least.

A book that focuses on care practices is also a book that relies on the stories that people tell about their lives. When a family member lives with a diagnosis of dementia, care must be ready at all times of the day and the night to support that person in living at home. Sometimes care practices are readied ahead of time, guiding the person living with dementia, limiting the full range of options to just a few that can be managed by family members. At other times, care practices must be improvised in the moment as new possibilities arise in the midst of other life events. We could not have written about the ‘thickness’ (Savransky, 2018, p 217) of these problems of living at home without the generous participation of the four families whose stories were shared with us and that we describe in some detail in the chapters of this book. We thank them for their generosity and for their caring.

Living with dementia, caring for a family member who has been assigned this diagnosis, involves mutual effort sustained over a long time. We knew of other books that had been written about this life that families lead when they are caring for someone diagnosed with dementia and how many of them, focusing without necessarily foregrounding this issue of sustaining, describe this life in order to advise readers how to live well while doing this work – how to sustain themselves as caregivers. Often those instructions on how to sustain the work of caregiving come in the form of finding ways of taking time away from the work. But this is to effect a separation in caring practices that, in our book, we work to approximate in partial connection.

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

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