ArticleNeurology. Clinical practice2020
Diagnostic experience reported by caregivers of patients with frontotemporal degeneration.
Article in Neurology. Clinical practice, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 1 of them a synthesis that pooled it.
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Who cites it
13 citing papers in PubMed, 1 synthesis or guideline pooled it, 26 citations in OpenAlex.
- Time to Diagnosis in Dementia: A Systematic Review With Meta-Analysis.International journal of geriatric psychiatry · 2025Pooled it
- A spouse's perspective on communication breakdowns and supportive strategies for semantic variant primary progressive aphasia.Aphasiology · 2025Article
- Identifying and Diagnosing TDP-43 Neurodegenerative Diseases in Psychiatry.The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry · 2024Review
- Living With Frontotemporal Degeneration: Diagnostic Journey, Symptom Experiences, and Disease Impact.Journal of geriatric psychiatry and neurology · 2023Article
- The Media Coverage of Bruce Willis Reveals Unfamiliarity With Frontotemporal Degeneration.Innovation in aging · 2023Article
- "Now at least we have something to call it": Patient and care partner experiences receiving an amyloid PET scan.Journal of the American Geriatrics Society · 2022Article
- Comprehensive cross-sectional and longitudinal analyses of plasma neurofilament light across FTD spectrum disorders.Cell reports. Medicine · 2022Article
- Rural Versus Non-Rural Residence and Psychosocial Outcomes Among Caregivers of Patients with Dementia and Related Disorders.Journal of Alzheimer's disease : JAD · 2022Article
- Progressive apraxia of speech: delays to diagnosis and rates of alternative diagnoses.Journal of neurology · 2021Article
- Methods to Address Self-Selection and Reverse Causation in Studies of Neighborhood Environments and Brain Health.International journal of environmental research and public health · 2021Review
- The Frontal Behavioral Battery: A Measure of Frontal Lobe Symptoms in Brain Aging and Neurodegenerative Disease.Journal of Alzheimer's disease : JAD · 2021Article
- Intention to Screen for Alzheimer's Disease by Residential Locale.International journal of environmental research and public health · 2020Article
- Exploring neuropsychiatric and behavioral symptoms, and social cognitive deficits in the differential diagnosis of behavioral variant of frontotemporal dementia and primary psychiatric disorders: A systematic literature review.Alzheimer's & dementia (Amsterdam, Netherlands)Review
Corrections and comments
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Authors and funding
2 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo describe the experience of obtaining a diagnosis of frontotemporal degeneration (FTD) for patients and caregivers.
methodsData came from a 2017 web-based survey of 698 FTD caregivers. Clinical characteristics and diagnostic experiences were described according to the phenotype of the patient with FTD (behavioral variant FTD, primary progressive aphasia, FTD with motor neuron disease, or progressive supranuclear palsy/corticobasal syndrome). Unadjusted and adjusted logistic regression analyses determined associations between patient with FTD and caregiver characteristics and (1) receiving a diagnosis >1 year after initial symptoms and (2) first receiving a non-FTD diagnosis.
resultsMean age was 66 ± 9 years for patients with FTD and 61 ± 10 years for FTD caregivers. Forty-four percent of patients took more than 1 year; 65% saw 3 or more doctors; and 84% required 3 or more visits to establish an FTD diagnosis. Initial diagnosis was depression or other psychiatric condition in 21% of patients. Twenty-eight percent of caregivers and 26% of patients lost ≥11 work days seeking diagnosis. The majority of diagnoses (66%) were made by neurologists. Patient and caregiver age, having a spouse caregiver, rural residency, and mood changes as first symptom were associated with a longer time to receive FTD diagnosis. Caregivers frequently rated diagnosing doctors as good/excellent in knowledge of FTD but as inadequate/poor on knowledge of available community resources.
conclusionsThis study, which quantifies the patient with FTD and caregiver burden before receiving the FTD diagnosis, can inform clinical practice, interventions to address diagnostic delays, and programs and services to support patients/caregivers during and following the diagnosis.
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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.