ArticlePloS one2019
End-of-life experiences in dementia with Lewy bodies: Qualitative interviews with former caregivers.
Article in PloS one, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers, 3 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
26 citing papers in PubMed, 3 syntheses or guidelines pooled it, 41 citations in OpenAlex.
- Caregiver-reported barriers and facilitators to hospice enrollment for persons with dementia: A systematic review of qualitative evidence.Palliative medicine · 2025Pooled it
- Examining the lived experience of dementia with Lewy bodies through qualitative research: A systematic review.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Pooled it
- Comparison of the experience of caregiving at end of life or in hastened death: a narrative synthesis review.BMC palliative care · 2020Pooled it
- What's in the Sauce? The Specific Benefits of Palliative Care for Parkinson's Disease.Journal of pain and symptom management · 2022Trial
- "They're exhausted": Hospice Staff Views on Caring for Patients and Families Impacted By Dementia.Journal of pain and symptom management · 2026Article
- Exploring Knowledge and Awareness of Lewy Body Dementia Among Staff in Long-Term Care Facilities.Journal of multidisciplinary healthcare · 2026Article
- Pilot quasi-experimental single-arm study of a virtual intervention for caregivers of persons with Lewy body dementia.Aging & mental health · 2025Article
- Suffering and loss in Lewy body dementia: Applying a palliative care lens to a longitudinal narrative study.Palliative & supportive care · 2025Article
- Research on the perspectives of people affected by dementia with Lewy bodies: a scoping review.Alzheimer's research & therapy · 2025Article
- Hospice Use Among Medicare Beneficiaries With Parkinson Disease and Dementia With Lewy Bodies.JAMA network open · 2025Article
- Identification and validation of end-of-life nursing care competencies for Kenyan nurses: A modified Delphi technique.Canadian oncology nursing journal = Revue canadienne de nursing oncologique · 2025Article
- Caregiver Experiences and Burden in Moderate-Advanced Dementia With Lewy Bodies.Neurology. Clinical practice · 2024Article
- Necropolitics of Death in Neurodegeneration.Culture, medicine and psychiatry · 2024Review
- End-of-life experiences in individuals with dementia with Lewy bodies and their caregivers: A mixed-methods analysis.PloS one · 2024Observational
- End-of-Life Healthcare Utilization in Lewy Body Dementia.Journal of Alzheimer's disease : JAD · 2024Article
- Pacemaker Implants and Their Influence on the Daily Life of Patients with Dementia with Lewy Bodies: A Qualitative Case Study.Neurology and therapy · 2023Article
- Virtual Intervention for Caregivers of Persons With Lewy Body Dementia: Pilot Quasi-Experimental Single-Arm Study.JMIR formative research · 2022Article
- Practice of end-of-life care for patients with advanced dementia by hospital physicians and nurses: Comparison between medical and surgical wards.Dementia (London, England) · 2022Article
- Predictors of Mortality in Individuals with Dementia in the National Alzheimer's Coordinating Center.Journal of Alzheimer's disease : JAD · 2022Article
- A UK qualitative study of living and dying with dementia in the last year of life.Palliative care and social practice · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors at 2 institutions in 1 country.
Funding
Abstract
backgroundDementia caregivers describe knowing what to expect as an unmet need and many are unaware that dementia can be a terminal condition. Dementia with Lewy bodies (DLB) is a common neurodegenerative dementia with unique features which may affect the end of life (EOL). Given the paucity of data on EOL experiences in dementia and unique aspects of DLB affecting EOL, we investigated EOL experiences as reported by caregivers of individuals with DLB.
methodWe conducted telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years using a semi-structured questionnaire to identify and describe EOL experiences. We used a qualitative descriptive approach to analyze interview transcripts and identify common themes.
resultsThirty individuals participated in interviews. Key themes included lack of knowledge regarding what to expect, end-of-life time course (including end-of-life symptoms, declines after hospitalization and falls, and varied EOL trajectories), advance care planning, lack of family understanding, hospice, views regarding right-to-die, medications at the end of life, approaching end of life, the death experience, and activities that enhanced end of life. Lack of communication between health care teams and families and difficulty predicting death timing were two frequently expressed challenges.
conclusionsStudy results emphasize the need for improved EOL counseling in DLB, recognition of EOL symptoms, earlier hospice involvement, tailoring EOL care to DLB-specific needs, and clinician-family communication. Suggestions for patient and family education are provided. Further research should confirm predictors of approaching EOL in DLB, identify strategies to improve physician recognition of EOL, and develop tools to aid communication and quality EOL care.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.