ArticleThe American journal of hospice & palliative care2020
Caregiver-Reported Barriers to Quality End-of-Life Care in Dementia With Lewy Bodies: A Qualitative Analysis.
Article in The American journal of hospice & palliative care, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 3 of them syntheses that pooled it.
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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
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Who cites it
18 citing papers in PubMed, 3 syntheses or guidelines pooled it, 33 citations in OpenAlex.
- Mind the gap: a systematic review of barriers, facilitators, and experiences of care transitions for people living with dementia and their informal caregivers.The Gerontologist · 2026Pooled it
- 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
- 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
- Caregiver Experiences and Burden in Moderate-Advanced Dementia With Lewy Bodies.Neurology. Clinical practice · 2024Article
- End-of-life experiences in individuals with dementia with Lewy bodies and their caregivers: A mixed-methods analysis.PloS one · 2024Observational
- The intersection of social determinants of health and family care of people living with Alzheimer's disease and related dementias: A public health opportunity.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2023Article
- Home-based care for people living with dementia at the end of life: the perspective of experts.BMC palliative care · 2023Article
- Learning to PERSEVERE: A pilot study of peer mentor support and caregiver education in Lewy body dementia.Parkinsonism & related disorders · 2023Article
- Costs During the Last Five Years of Life for Patients with Clinical and Pathological Confirmed Diagnosis of Lewy Body Dementia and Alzheimer's Disease.Journal of Alzheimer's disease : JAD · 2023Article
- Article
- A UK qualitative study of living and dying with dementia in the last year of life.Palliative care and social practice · 2022Article
- Concerns and potential improvements in end-of-life care from the perspectives of older patients and informal caregivers: a scoping review.BMC geriatrics · 2021Article
- Research priorities of caregivers and individuals with dementia with Lewy bodies: An interview study.PloS one · 2020Article
- It is time to share Alzheimer biomarker results in dementia with Lewy bodies.Alzheimer's & dementia (Amsterdam, Netherlands)Article
- Refractory Psychosis as a Red Flag for End of Life in Individuals With Dementia With Lewy Bodies: A Case Series and Re-analysis of Prior Qualitative Data.Alzheimer disease and associated disordersArticle
Corrections and comments
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Authors and funding
6 authors at 2 institutions in 1 country.
Funding
Abstract
objectiveThis study investigated barriers to quality end-of-life (EOL) care in the context of dementia with Lewy bodies (DLB), one of the most common degenerative dementias in the United States.
methodsThe study consisted of telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years. Interviews used a semi-structured questionnaire. Investigators employed a qualitative descriptive approach to analyze interview transcripts and identify common barriers to quality EOL care.
resultsThirty participants completed interviews. Reported barriers to quality EOL experiences in DLB pertained to the DLB diagnosis itself and factors relating to the US health-care system, facilities, hospice, and health-care providers (physicians and staff). Commonly reported barriers included lack of recognition and knowledge of DLB, lack of education regarding what to expect, poor coordination of care and communication across health-care teams and circumstances, and difficulty accessing health-care resources including skilled nursing facility placement and hospice.
conclusionMany identified themes were consistent with published barriers to quality EOL care in dementia. However, DLB-specific EOL considerations included diagnostic challenges, lack of knowledge regarding DLB and resultant prescribing errors, difficulty accessing resources due to behavioral changes in DLB, and waiting to meet Medicare dementia hospice guidelines. Improving EOL experiences in DLB will require a multifaceted approach, starting with improving DLB recognition and provider knowledge. More research is needed to improve recognition of EOL in DLB and factors that drive quality EOL experiences.
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