Qualitative exploration of emotional and social changes from diagnosis to bereavement for spousal caregivers of persons with dementia

BMJ Open. 2019 Sep 24;9(9):e031423. doi: 10.1136/bmjopen-2019-031423.


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.

Keywords: bereavement; caregiving; emotional changes; qualitative; social connections.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adaptation, Psychological*
  • Aged
  • Bereavement*
  • Canada
  • Caregivers / psychology*
  • Dementia* / diagnosis
  • Dementia* / mortality
  • Dementia* / psychology
  • Depression / psychology*
  • Family / psychology
  • Female
  • Hospice Care / psychology
  • Humans
  • Interpersonal Relations*
  • Male
  • Psychological Distress*
  • Qualitative Research
  • Social Support*