Objectives To understand how bereaved spousal caregivers of persons with dementia perceive and respond to changes over the course of their spouse’s disease, from diagnosis into bereavement.
Design Qualitative interview study with convenience sampling and thematic analysis approach.
Participants Participants included eight women and two men (n=10) who had been spousal caregivers for a person with dementia prior to his/her death. Participants were older adults who self-reported good health and were bereaved longer than a year.
Setting Data collected in a small Canadian prairie city between fall 2014 and winter 2015.
Findings Two overarching themes were developed as important components of participants’ caregiving journey: emotional reactions to change and variation in social connectedness throughout the caregiving and bereavement journey. Four key sub-themes developed through the analysis of emotional reactions to events: memorable grief overshadows persistent grief, a progressive feeling of hopelessness and overwhelmed, relief is common but hidden and gratitude is a milestone in a constructive bereavement. Three key variations of social connectedness throughout the caregiving and bereavement journey were developed: the importance of social inclusion throughout a caregiving and bereavement journey, the repeated loss of companionship and withdrawing from social interactions is contingent on needs.
Conclusions The findings suggest that emotional changes throughout caregiving and bereavement are not linear. The need for support from family, friends and new social supports is influential in enabling the caregiver to move forward during caregiving and bereavement.
- social connections
- emotional changes
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Contributors SP conceptualised the original study and critiqued data analyses. KG conducted interviews, analysed results, conceptualised the current study, prepared the first draft and was responsible for the subsequent revisions of the manuscript. MB transcribed, checked the transcripts against the audio files. SP and MB provided feedback and approved the final version of this manuscript.
Funding This work was supported by a Saskatchewan Health Research Foundation, Establishment Grant.
Competing interests None declared.
Patient and public involvement statement This research was done without participant involvement. Participants were not invited to comment on the study design, were not consulted to develop participant relevant outcomes or interpret the results, and were not invited to contribute to the writing or editing of this document for readability or accuracy.
Patient consent for publication Not required.
Ethics approval University of Saskatchewan Ethics Committee (2014-2018).
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement No data are available.
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