ArticlePloS one2020
Research priorities of caregivers and individuals with dementia with Lewy bodies: An interview study.
Article in PloS one, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 3 of them syntheses that pooled it.
What it found
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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
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
17 citing papers in PubMed, 3 syntheses or guidelines pooled it, 22 citations in OpenAlex.
- 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
- A Systematic Review of Dementia Research Priorities.Journal of geriatric psychiatry and neurology · 2024Pooled it
- Comparing international dementia research priorities-Systematic review.International journal of geriatric psychiatry · 2022Pooled it
- Challenges and needs in dementia care: people with dementia and family caregivers' experiences from diagnosis to follow-up in Swedish primary care: a qualitative study.Scandinavian journal of primary health care · 2026Article
- Family Carer Involvement in Dementia Care Research: A Scoping Review and Expert Consultation.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Do We Need Systematic Reviews of Research Priority Setting? A Proposal for a New Concept on Conducting Systematic Reviews of Research Priority Setting Exercises.Cochrane evidence synthesis and methods · 2026Article
- From engagement to dissemination: a WiseAge patient and public involvement and engagement event on dementia with Lewy bodies.Frontiers in dementia · 2026Article
- Treatment priorities from the perspectives of people with dementia with Lewy bodies: a reflexive thematic analysis.Frontiers in dementia · 2026Article
- Research on the perspectives of people affected by dementia with Lewy bodies: a scoping review.Alzheimer's research & therapy · 2025Article
- Involvement of family caregivers in dementia care research: a scoping review protocol.Systematic reviews · 2024Article
- Patient- and proxy-reported quality of life in advanced dementia with Lewy bodies.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2024Article
- Sex differences in dementia with Lewy bodies: Focused review of available evidence and future directions.Parkinsonism & related disorders · 2023Review
- Lewy Body Dementias: Controversies and Drug Development.Neurotherapeutics : the journal of the American Society for Experimental NeuroTherapeutics · 2022Review
- Comparison of the Caregiving Experience of Grief, Burden, and Quality of Life in Dementia with Lewy Bodies, Alzheimer's Disease, and Parkinson's Disease Dementia.Journal of Alzheimer's disease : JAD · 2021Article
- Advances in dementia with Lewy bodies.Therapeutic advances in neurological disorders · 2021Review
- It is time to share Alzheimer biomarker results in dementia with Lewy bodies.Alzheimer's & dementia (Amsterdam, Netherlands)Article
- A common outcome set for trials in dementia with Lewy bodies (DLB COS).Alzheimer's & dementia (New York, N. Y.)Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors at 3 institutions in 1 country.
Funding
Abstract
backgroundFunding bodies are placing increased emphasis on patient and public involvement in research, but the research priorities of individuals and caregivers living with dementia with Lewy bodies (DLB) are unknown.
methodInvestigators conducted telephone interviews with individuals living with DLB and caregivers. Participants were recruited from a Lewy Body Dementia Association Research Center of Excellence. Interviews employed a semi-structured questionnaire querying research needs in different categories and then asking participants to select their top priorities. Investigators used a qualitative descriptive approach to analyze transcripts and identify themes.
resultsTwenty individuals with DLB and 25 caregivers participated. Seventeen from each group participated as part of a patient-caregiver dyad. Twenty-three of the caregivers were spouses, two were daughters. Individuals with DLB and caregivers identified research needs relating to focusing on awareness, determining the cause of DLB, improving diagnosis, and investigating what to expect/disease stages. Participants also highlighted DLB symptoms needing additional research, therapies to prevent, cure, or slow the progression of DLB, and research targeting daily function and quality of life, caregiving, and improving education.
conclusionsThese findings support the research priorities defined in the National Institutes of Health dementia care summits in addition to ADRD priority-setting summits. Research is needed across all domains of DLB. Funding should be informed by the priorities of all relevant stakeholders and support research investigating causes, natural history, biomarkers, and treatment in addition to research targeting themes regarding living with disease (e.g. independence, quality of life, caregiving, and education).
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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.