This scoping review explores findings from the psychological and medical literature on the adaptive grieving experiences of bereaved dementia family caregivers and integrates what healthcare professionals can do to support bereaved dementia family caregivers transition into a post-death role. Bereaved dementia family caregivers are particularly susceptible to prolonged grief disorder post-death due to the protracted caregiving demands and progressive course of the illness. The mention of caregiver grief while the person with dementia is living is quite common in the literature; however, limited research focuses on the bereaved dementia family caregiver and the methods they use to grieve adaptively. Three overarching adaptive grieving themes emerged from the review: 1) social health, 2) emotional and spiritual fitness, and 3) reclaiming activities. Given the growing prevalence of bereaved family dementia caregivers, understanding how they might most adaptively grieve and experience the greatest possible well-being should be a top focus for research.
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http://dx.doi.org/10.1177/00302228231217334 | DOI Listing |
BMJ Support Palliat Care
November 2024
Center of Expertise in Palliative Care, Leiden University Medical Center, Leiden, Netherlands.
Objectives: To explore the common ground of what family caregivers need in their various roles (caregiver, care recipient and patient's partner, child or friend) from healthcare professionals across healthcare settings and disease trajectories.
Design: Interviews were conducted with family caregivers of patients with life-threatening diseases who were treated at home, in hospitals, nursing homes or hospices between 2017 and 2022. Reflexive thematic analysis was performed.
Alzheimer Dis Assoc Disord
November 2024
Edson College of Nursing and Health Innovation, Arizona State University, Phoenix, AZ.
Introduction: People with dementia can have many family and friends who might be affected by their deaths. Pursuing the long-term aim of understanding how dementia deaths affect close family and friends, this project lays groundwork through estimates of who those close family and friends are, with special attention to race and ethnicity.
Method: Regression models estimated associations between dementia, race/ethnicity, and close family and friend network size, controlling for age, sex, education, marital status, and household wealth for 1386 deceased people with dementia from the Health and Retirement Study (2004 to 2018).
Am J Geriatr Psychiatry
February 2025
Lien-Centre for Palliative Care (IC, LP, IB, EBA, CM), Duke-NUS Medical School, Singapore; Program in Health Services and Systems Research (CM), Duke-NUS Medical School, Singapore. Electronic address:
Objectives: Family caregivers of older adults with severe dementia often experience anticipatory grief. We aimed to investigate the temporal association of caregiving stressors (older adults' behavioral symptoms, and caregiver-older adult co-residence and emotional closeness) and caregivers' anticipatory grief, and its mediation by positive and negative caregiving experiences.
Design: Prospective cohort.
Dementia (London)
January 2025
Centre for Gerontology and Rehabilitation, School of Medicine, University College Cork, Ireland.
Introduction: A palliative care approach can improve quality-of-life for people with dementia. It is the preference of many people with dementia to remain living at home until death, with the appropriate care. To develop a successful model for dementia palliative care in the community, it is essential to assimilate the perspectives and experiences of those affected.
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August 2024
Liverpool John Moores University, Faculty of Health, Tithebarn Street, Liverpool L2 2ER, UK.
Background: In the UK, a large proportion of older adults live in rural/remote locations. More people are dying at home and require care from their families. Little is known about the experiences of family carers of older people in rural/remote areas in the last year of life.
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