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Open Access 01-12-2022 | Care | Research

Building a new life: a qualitative study of how family carers deal with significant changes

Authors: Wendy Duggleby, Hannah M. O’Rourke, Pamela Baxter, Cheryl Nekolaichuk, Genevieve Thompson, Shelley Peacock, Sunita Ghosh, Jayna Holroyd-Leduc, Carrie McAiney, Véronique Dubé, Jennifer Swindle, Madeleine Pagnucco-Renaud, Samina Sana

Published in: BMC Geriatrics | Issue 1/2022

Abstract

Background

Family carers of persons living with dementia who are residing in long term care (LTC), often experience significant changes in their roles and relationships which affects mental and physical health. Research has focused on describing the carers’ experience, but not on how they deal with these changes or their perceptions of support needs. The purpose of this study was to explore how family carers of persons living with dementia residing in LTC deal with significant changes and to understand how best to support these carers.

Methods

Eight face-to-face audio-recorded focus group interviews were conducted with 45 participants from September 2019 to January 2020, as part of a larger study aimed at guiding the adaptation of an online toolkit to support family carers of persons living with dementia residing in LTC. Applied thematic analysis was used to analyze the focus group data.

Findings/results

Carers dealt with the significant changes they experienced through the process of “building a new life” consisting of two sub-processes: a) building new relationships (with their family member, LTC staff and others outside of LTC), and b) finding space for themselves (sharing of care and finding balance). Understanding dementia, support from others (staff, family and friends), connecting with resources, and being included in care decisions helped carers build a new life.

Conclusion

The process of building a new life describes the ways that family carers deal with the life-altering changes they experienced when a family member is admitted to LTC. Carers may be supported in building their new life, by providing them with information about dementia and how to relate to staff and their family member living with dementia. The quality of care being provided and the LTC environment may also play an important role in how carers deal with the significant changes they experience.

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Title: Building a new life: a qualitative study of how family carers deal with significant changes
Authors: Wendy Duggleby
Hannah M. O’Rourke
Pamela Baxter
Cheryl Nekolaichuk
Genevieve Thompson
Shelley Peacock
Sunita Ghosh
Jayna Holroyd-Leduc
Carrie McAiney
Véronique Dubé
Jennifer Swindle
Madeleine Pagnucco-Renaud
Samina Sana
Publication date: 01-12-2022
Publisher: BioMed Central
Keywords: Care
Dementia
Dementia
Published in: BMC Geriatrics / Issue 1/2022
Electronic ISSN: 1471-2318
DOI: https://doi.org/10.1186/s12877-022-03236-8

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