ArticleSAGE open nursing
"A Crazy Roller Coaster at the End": A Qualitative Study of Death Preparedness With Caregivers of Persons With Dementia.
Article in SAGE open nursing. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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Who cites it
6 citing papers in PubMed.
- 'Regrets become a lasting source of pain': A qualitative study on family caregivers' experiences leading up to a relative's death.Palliative medicine · 2025Article
- Supporting Family Caregivers of Nursing Home Residents with Dementia in Their Last Week of Life: A Survey Among Bereaved Family Caregivers.Palliative medicine reports · 2025Article
- 'A good ending but not the end': Exploring family preparations surrounding a relative's death and the Afterlife - A qualitative study.Palliative medicine · 2024Article
- Family Experiences of Loss and Bereavement in Palliative Care Units during the COVID-19 Pandemic: An Interpretative Phenomenological Study.Healthcare (Basel, Switzerland) · 2024Article
- Knowledge Gaps in End-Of-Life Family Caregiving for Persons Living With Dementia: A Study of Hospice Clinician Perspectives.The American journal of hospice & palliative care · 2024Article
- Caring ahead: Mixed methods development of a questionnaire to measure caregiver preparedness for end-of-life with dementia.Palliative medicine · 2021Article
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionCaregivers of persons with dementia experience challenges that can make preparing for end-of-life particularly difficult. Feeling prepared for death is associated with caregiver well-being in bereavement and is promoted by strategies supporting a palliative approach. Further conceptualization of caregiver preparedness for death of persons with dementia is needed to guide the practice of healthcare providers and to inform development of a preparedness questionnaire.
objectivesWe aimed to: 1) explore the end-of-life experiences of caregivers of persons with dementia to understand factors perceived as influencing preparedness; and 2) identify the core concepts (i.e., components), barriers and facilitators of preparedness for death.
methodsThis study used an interpretive descriptive design. Semi-structured interviews were conducted with sixteen bereaved caregivers of persons with dementia, recruited from long-term care homes in Ontario. Data was analyzed through reflexive thematic analysis.
findingsFour themes were interpreted including: 'A crazy rollercoaster at the end' which described the journey of caregivers at end-of-life. The journey provided context for the development of core concepts (i.e., components) of preparedness represented by three themes: 'A sense of control, 'Doing right' and 'Coming to terms'.
conclusionThe study findings serve to expand the conceptualization of preparedness and can guide improvements to practice in long-term care. Core concepts, facilitators and influential factors of preparedness will provide the conceptual basis and content to develop the Caring Ahead: Preparing for End-of-Life with Dementia questionnaire.
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