ArticleParkinsonism & related disorders2010
Lewy body dementia: the caregiver experience of clinical care.
Article in Parkinsonism & related disorders, 2010. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 76 papers, 2 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.
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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.
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Who cites it
76 citing papers in PubMed, 2 syntheses or guidelines pooled it, 150 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
- Systematic review of differentially abundant proteins in people with Lewy body dementia.Acta neuropsychiatrica · 2025Pooled it
- Neuropathological correlates of imaging in dementia with Lewy bodies.Journal of neural transmission (Vienna, Austria : 1996) · 2026Review
- Theta burst stimulation for depressive symptoms in early-stage dementia with Lewy bodies: Protocol for a single-arm open-label feasibility study (DL-TBS Study).PCN reports : psychiatry and clinical neurosciences · 2026Article
- Resting-State EEG Features of Cognitive Fluctuations Across the Lewy Body Disease Spectrum.Research square · 2026Article
- Where do PDD and DLB SYNdromes fit in neuronal alpha-SYNuclein biological frameworks?Journal of neural transmission (Vienna, Austria : 1996) · 2026Review
- Testing the Clinical Dementia Rating Sum of Boxes as an Outcome for Dementia with Lewy Bodies Clinical Trials.Neurology and therapy · 2025Article
- Utilization Patterns and Clinical Factors Associated With Hospitalization in Early-Stage Dementia With Lewy Bodies.International journal of geriatric psychiatry · 2025Article
- Implications and opportunities regarding biological frameworks in overt and prodromal dementia with Lewy bodies.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Review
- Suffering and loss in Lewy body dementia: Applying a palliative care lens to a longitudinal narrative study.Palliative & supportive care · 2025Article
- Aβ42 biomarker linked to insula, striatum, thalamus and claustrum in dementia with Lewy bodies.GeroScience · 2025Article
- Right anterior insula ASL hypoperfusion as a diagnostic biomarker of prodromal and mild dementia with Lewy bodies: preliminary evidence using a Bayesian approach.GeroScience · 2025Article
- Research on the perspectives of people affected by dementia with Lewy bodies: a scoping review.Alzheimer's research & therapy · 2025Article
- Accurate detection of pathologic α-synuclein in CSF, skin, olfactory mucosa, and urine with a uniform seeding amplification assay.Acta neuropathologica communications · 2025Article
- Clinical characteristics of pathological confirmed DLB without parkinsonism.Journal of the neurological sciences · 2025Article
- Clinical Evolution of Neuropsychiatric Symptoms in Alzheimer's Disease and Dementia With Lewy Bodies in a Post-Mortem Cohort.International journal of geriatric psychiatry · 2025Article
- The Hidden Value of Adult Informal Care in Europe.Health economics · 2025Article
- Hospice Use Among Medicare Beneficiaries With Parkinson Disease and Dementia With Lewy Bodies.JAMA network open · 2025Article
- Differentiating Prodromal Dementia with Lewy Bodies from Prodromal Alzheimer's Disease: A Pragmatic Review for Clinicians.Neurology and therapy · 2024Article
- Caregiver Experiences and Burden in Moderate-Advanced Dementia With Lewy Bodies.Neurology. Clinical practice · 2024Article
16 more citing papers are in PubMed but not listed here.
Corrections and comments
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Authors and funding
6 authors at 5 institutions in 1 country.
Funding
Abstract
backgroundLewy body dementia (LBD) is the second most common cause of dementia, however, little is known about how the clinical diagnosis of LBD is obtained in the community or the caregiver experience while seeking the diagnosis.
methodsThe Lewy Body Dementia Association (www.LBDA.org) conducted a web-based survey of 962 caregivers over a 6-month period.
resultsThe mean age of respondents was 55.9y; 88% were female and 64% had daily contact with patients. The mean age of LBD patients was 75.4y; 62% were male and 46% lived with a caregiver. The most common presentation of symptoms as reported by LBD caregivers was cognitive (48%), motor (39%) or both (13%). The first diagnoses given to the patients were Parkinson disease or other movement disorder (39%), Alzheimer disease or other cognitive disorder (36%), or mental illness (24%). Fifty percent of patients saw >3 doctors for more than 10 visits over the course of 1 year before an LBD diagnosis was established. Neurologists diagnosed most cases (62%), while primary care providers diagnosed only 6% of cases. No differences were found between the presentation of disease and the number of physicians, number of office visits, length of time to establish diagnosis, or type of doctor who finally made an LBD diagnosis. Caregivers viewed physicians as knowledgeable about disease manifestations and treatment options, but not about disease course/prognosis and available community resources and referrals.
conclusionsThese data highlight a need for increasing physician awareness and knowledge of LBD, which will facilitate accurate diagnosis and treatment. Community resources such as the Lewy Body Dementia Association may serve this end, while also providing practical information and support for caregivers.
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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.