ArticleNursing ethics
Ethical challenges in end-stage dementia: Perspectives of professionals and family care-givers.
Article in Nursing ethics. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 3 of them syntheses that pooled it.
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Who cites it
16 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- Ethical dilemmas in the care of patients with Alzheimer's disease and related dementias unable to give informed consent: positioning Lebanon within the Global North-South context.BMC medical ethics · 2025Pooled it
- Caregiver-reported barriers and facilitators to hospice enrollment for persons with dementia: A systematic review of qualitative evidence.Palliative medicine · 2025Pooled it
- Aspiration pneumonia in nursing literature-a mapping review.Frontiers in rehabilitation sciences · 2024Pooled it
- Family caregivers' perspectives on ethical challenges in dementia care.Nursing ethics · 2026Article
- Navigating resistive behavior that adversely affects the intake of food and fluids in people living with dementia: A multiple case study.Journal of Alzheimer's disease : JAD · 2026Article
- A Preliminary Exploration of the Behavioural Criteria of Ethical Care With Dementia.Nursing open · 2026Review
- Decision-making of artificial nutrition and hydration in hospice care: A qualitative study of Chinese patients and family caregivers.Asia-Pacific journal of oncology nursing · 2025Article
- Knowledge, attitudes, and representations of caregivers of individuals with major neurocognitive disorders regarding palliative and end-of-life care: a narrative literature review.BMC palliative care · 2025Review
- Global burden of Alzheimer's disease and other dementias in adults aged 65 years and over, and health inequality related to SDI, 1990-2021: analysis of data from GBD 2021.BMC public health · 2025Article
- Examining the Contribution of Nurse Practitioners to Geriatric and Palliative Care in Israel.Nursing reports (Pavia, Italy) · 2025Article
- How Nursing Home Nurses Who Care for Residents With Dementia Experience the Moral Distress? A Phenomenography Study.Nursing open · 2025Article
- Understanding mealtime behavioral problems in nursing home residents living with dementia: a group concept mapping approach.BMC geriatrics · 2024Article
- Resources to Support Decision-Making Regarding End-of-Life Nutrition Care in Long-Term Care: A Scoping Review.Nutrients · 2024Article
- The Professional Guest: conceptualizing home visits in palliative care settings.Palliative care and social practice · 2024Article
- The Communication Challenges and Strength of Nurses' Intensive Corona Care during the Two First Pandemic Waves: A Qualitative Descriptive Phenomenology Study.Healthcare (Basel, Switzerland) · 2022Article
- Emotion work and feeling rules: Coping strategies of family caregivers of people with end stage dementia in Israel-A qualitative study.Dementia (London, England) · 2022Article
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundIn Israel, caring for people with end-stage dementia confined to home is mainly done by home care units, and in some cases by home hospice units, an alternative palliative-care service. Because life expectancy is relatively unknown, and the patient's decision-making ability is poor, caring for this unique population raises ethical dilemmas regarding when to define the disease as having reached a terminal stage, as well as choosing between palliative and life-prolonging-oriented care.
objectivesExploring and describing differences and similarities of professional staff members' (PSMs') and family caregivers' perceptions of caring for people with end-stage dementia in two different settings.
designQualitative research, using semi-structured interviews analyzed through a thematic content-analysis approach.
participantsSixty-four interviews were conducted (24 PSMs and 40 family caregivers) in two care-settings-home hospice unit and home care unit. ETHICAL CONSIDERATIONS: The study was approved by the Ethics Committee (BBL00118-17).
findingsWe found dilemmas regarding palliative care to be the main theme, including definition of the disease as terminal, choosing "comfort" over "life-prolonging," clarifying patients' wishes and deciding whether or not to use artificial feeding. DISCUSSION: Both PSMs and family caregivers deal with ethical dilemmas and have reached different conclusions, both legitimate. Comprehending dementia as a terminal disease influenced participants' perceptions of the relevancy of palliative care for people with end-stage dementia. Discrepancies between PSMs and family caregivers in caring for people with end-stage dementia were found in both home hospice unit and home care unit environments, raising potential conflicts regarding decisions for end-of-life care.
conclusionsCommunication between PSMs and family caregivers is crucial for the discussion about the discrepancies regarding the unique dilemmas of caring for people with end-stage dementia and bridging the gap between them. Lack of communication and resources can hamper the provision of an acceptable solution for quality and equality of care in the best interest of people with end-stage dementia.
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