Welcoming Death: Exploring Pre-Death Grief Experiences of Caregivers of Older Adults with Dementia

Hovland, Cynthia

doi:10.1080/15524256.2018.1508538

Cited by 18 publications

(21 citation statements)

References 34 publications

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“…This means that due to the unique experiences of losing their spouse, spousal caregivers may grieve for the loss of their spouse during caregiving. Having already grieved throughout their caregiving experience while simultaneously recognising their spouse’s suffering, bereaved spousal caregivers may be overwhelmed with relief rather than grief 34. Although participants understood why they felt relief, many spousal caregivers felt apprehensive expressing their relief because it did not align with the social expectations of grief.…”

Section: Discussionmentioning

confidence: 99%

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

2019

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ObjectivesTo 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.DesignQualitative interview study with convenience sampling and thematic analysis approach.ParticipantsParticipants 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.SettingData collected in a small Canadian prairie city between fall 2014 and winter 2015.FindingsTwo 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.ConclusionsThe 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.

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Section: Discussionmentioning

confidence: 99%

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

2019

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“…Thirty-one percent (9/29) of articles examined how ICs of dementia patients experience grief. 28 , 29 , 32 , 36 , 38 , 39 , 42 , 44 , 48 One study reported greater grief and depression in dementia ICs compared to cardiac ICs. 44 A common theme was relief, and in one study, many caregivers (72%) viewed the death of the care recipient as a relief to themselves—likely due to the complicated progression of dementia.…”

Section: Resultsmentioning

confidence: 99%

“… 22 , 23 , 28 – 37 , 39 – 47 Sixty-nine percent (20/29) described negative psychosocial outcomes—including anxiety, despair, depression, distress, hopelessness, and hostility. 22 , 28 – 37 , 39 – 47 Fifty-two percent (15/29) specifically reported on the experience of depression or depressive symptoms during the grieving period. 22 , 31 , 32 , 34 , 36 – 40 , 42 – 47 The risk of depression in grieving caregivers was shown to correlate with caregiver rumination, higher perceived emotional suffering of patients, diminished feelings of relief, later enrollment in hospice and palliative care, patient's functional disability, unresolved regrets, and personal burden.…”

Section: Resultsmentioning

confidence: 99%

“…This included relief, a sense of accomplishment, personal growth, a strengthened relationship, hope, and gratefulness. 22 , 23 , 28 – 30 , 32 , 35 , 37 , 42 , 46 Experiences of relief were particularly common in the literature, with 24% (7/29) of articles reporting this emotion in grieving caregivers. 22 , 28 , 29 , 32 , 35 , 37 , 42 …”

Section: Resultsmentioning

confidence: 99%

“…In total, 16/29 articles (55%) identified disease type as a factor influencing the grief and bereavement of ICs. 23,24,[26][27][28][29][30]32,36,38,39,[42][43][44]46,48 Cognitive Impairments: Dementia and Alzheimer's Disease. Thirty-one percent (9/29) of articles examined how ICs of dementia patients experience grief.…”

Section: Mediators Of Griefmentioning

confidence: 99%

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The Grief and Bereavement Experiences of Informal Caregivers: A Scoping Review of the North American Literature

et al. 2021

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Background Informal caregivers are a significant part of the hospice and palliative care landscape as members of the interdisciplinary care team. Despite this, little is known about the impact this responsibility has on informal caregivers’ experiences of grief and bereavement. To address this, a scoping review of the literature was conducted to explore the current state of knowledge toward grief and bereavement of informal caregivers of adult/geriatric patients in the hospice and palliative/end-of-life care realm within North America. Methods Using Arksey and O’Malley's 5-step framework, key electronic health care and social sciences databases (eg, CINAHL, MEDLINE, ProQuest Sociological Abstracts, PsycINFO) alongside gray literature sources were searched and screened against inclusion and exclusion criteria. A thematic content analysis was used to identify key themes. Results 29 articles met the final inclusion criteria with 3 central themes emerging: (1) mediators of grief, (2) grief experiences, and (3) types of grief. Discussion Informal caregivers encounter unique grief and bereavement experiences: The range of psychosocial outcomes, both negative and positive, can be affected by various mediators such as caregiver burden, demographics, disease type of the patient being cared for, etc. Bereavement interventions must be designed with the mediators of grief in mind. Conclusions Understanding the nuances of informal caregivers’ experiences with grief and bereavement will inform and advance practice, policy, and research. Practitioners/clinicians should be further educated on how to properly acknowledge the complexity of grief and bereavement for informal caregivers, specifically paying attention to mediators. Further research needs to consider the role of culture.

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Reclaiming Yourself

Peacock¹,

Bayly²

2019

Hospice Palliative Home Care and Bereavement Support

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Welcoming Death: Exploring Pre-Death Grief Experiences of Caregivers of Older Adults with Dementia

Cited by 18 publications

References 34 publications

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

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

The Grief and Bereavement Experiences of Informal Caregivers: A Scoping Review of the North American Literature

Reclaiming Yourself

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