The bereavement experience of spousal caregivers to persons with dementia: Reclaiming self

Abstract

Spouses of persons living with dementia both anticipate future loss and grieve for multiple losses occurring with caregiving and this ultimately influences their bereavement experience. Little research has been conducted regarding the bereavement experience in the caregiving journey with dementia and what does exist is mostly quantitative in nature. The purpose of this study is to describe the bereavement experience of spousal caregivers ( n = 10) utilizing Thorne's interpretive description. Thematic analysis revealed the features and facilitators of the bereavement process for spousal caregivers to persons with dementia. The unique contribution of this study to the dementia literature is the finding that the overall process of reclaiming self is significant to the bereavement journey. Future work should investigate identity as understood by spousal caregivers to persons with dementia, and further explore the processes, facilitators, and barriers to healthy bereavement in this population.

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

“…Participants were made aware of the intentions of the goals of the original study prior to participation. The original study is published elsewhere 24…”

Caring for a family member or friend with dementia at the end of life: A scoping review and implications for palliative care practice

“…26 Carers' experiences of loss could also be exacerbated when care recipients were admitted into long-term care facilities, hospital, or hospice. 27 Due to care recipients' progressing symptoms, carers experienced an end to their relationships prior to care recipients' death, 7,21,26,28 with an additional loss encountered when physical death occurred. 20,24 An important part of a carer's relationship with a person with dementia was the ability to properly say goodbye.…”

“…21 Alongside the evident social isolation and loneliness, many carers also reported positive social support, emphasising the importance of extended networks of family and friends. 21,28 Informal networks were the most prevalent sources of support, which carers were very grateful for, particularly those who directly helped with caring responsibilities. 18,22,31 Helpful social support was associated with carers' positive self-perceptions and had long-term benefits beyond the end of caring responsibilities.…”

“…18,22,31 Helpful social support was associated with carers' positive self-perceptions and had long-term benefits beyond the end of caring responsibilities. 21,28,32 Ongoing support from the same people during and after caring was important, as it fostered a sense of continuity for carers and enabled them to establish their own identities following the cessation of their caring responsibilities. 21,28 Professionals.…”

“…21,28,32 Ongoing support from the same people during and after caring was important, as it fostered a sense of continuity for carers and enabled them to establish their own identities following the cessation of their caring responsibilities. 21,28 Professionals. Professional support was a major component of carers' experiences, evidenced by being mentioned in 20 out of the 22 papers reviewed.…”