ArticleNeurology2017
The social and economic burden of frontotemporal degeneration.
Article in Neurology, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 65 papers, 5 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
65 citing papers in PubMed, 5 syntheses or guidelines pooled it, 106 citations in OpenAlex.
- The prevalence of frontotemporal dementia: a systematic review and meta-analysis.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2026Pooled it
- The prevalence of frontotemporal dementia: a systematic review and meta-analysis.Neurological sciences : official journal of the Italian Neurological Society and of the Italian Society of Clinical Neurophysiology · 2026Pooled it
- The Alzheimer's Association clinical practice guideline for the Diagnostic Evaluation, Testing, Counseling, and Disclosure of Suspected Alzheimer's Disease and Related Disorders (DETeCD-ADRD): Executive summary of recommendations for specialty care.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Guideline
- Behavioral Treatment for Speech and Language in Primary Progressive Aphasia and Primary Progressive Apraxia of Speech: A Systematic Review.Neuropsychology review · 2024Pooled it
- Tracking disease progression in familial and sporadic frontotemporal lobar degeneration: Recent findings from ARTFL and LEFFTDS.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2020Pooled it
- Concentration-Dependent Activity of Hydromethylthionine on Clinical Decline and Brain Atrophy in a Randomized Controlled Trial in Behavioral Variant Frontotemporal Dementia.Journal of Alzheimer's disease : JAD · 2020Trial
- Lessons From the Communication Bridge Trials: Advancing Meaningful Dyadic Interventions Toward Implementation.Journal of speech, language, and hearing research : JSLHR · 2026Review
- LncRNA Gas5, a Target of the Nonsense-Mediated Decay Pathway in the Brain, Regulates Neuroinflammation and Neurodegenerative Disease Pathways in a Tauopathy Mouse Model.International journal of molecular sciences · 2026Article
- Long-Term Income and Productivity Losses in Individuals With Early-Onset Dementia: Evidence From 15 Years Preceding the Diagnosis.Neurology · 2026Article
- Genetic correlation analysis identifies TMEM106B, ACE, and ERC2 as genetic loci shared between Alzheimer's disease and primary psychiatric disorders.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2026Article
- The distinct challenges of living with young-onset dementia.NPJ dementia · 2026Review
- Intrathalamic delivery of adeno-associated viral vector expressing progranulin as gene therapy for GRN-related frontotemporal dementia.Molecular therapy. Methods & clinical development · 2025Article
- Criminal Behavior in Early Onset Neurodegenerative Diseases.European journal of neurology · 2025Article
- Developing digital health technologies for frontotemporal degeneration.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Review
- The Holy Grail: highlighting the need for equitable access to dementia treatments and clinical trials.The Lancet regional health. Western Pacific · 2025Review
- Neurodegenerative Disorders in Criminal Offending and Cognitive Decline Among Aging Inmates.NeuroSci · 2025Review
- Atypical Presentations of Alzheimer Disease.Continuum (Minneapolis, Minn.) · 2024Review
- Barriers and Facilitators to Participation in Clinical Trials Related to Familial Frontotemporal Dementia: A Qualitative Study.Molecular genetics & genomic medicine · 2024Article
- Clinical implications of head trauma in frontotemporal dementia and primary progressive aphasia.Alzheimer's research & therapy · 2024Article
- In vivo diagnosis of TDP-43 proteinopathies: in search of biomarkers of clinical use.Translational neurodegeneration · 2024Review
5 more citing papers are in PubMed but not listed here.
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 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo quantify the socioeconomic burden of frontotemporal degeneration (FTD) compared to previously published data for Alzheimer disease (AD).
methodsA 250-item internet survey was administered to primary caregivers of patients with behavioral-variant FTD (bvFTD), primary progressive aphasia, FTD with motor neuron disease, corticobasal syndrome, or progressive supranuclear palsy. The survey included validated scales for disease staging, behavior, activities of daily living, caregiver burden, and health economics, as well as investigator-designed questions to capture patient and caregiver experience with FTD.
resultsThe entire survey was completed by 674 of 956 respondents (70.5%). Direct costs (2016 US dollars) equaled $47,916 and indirect costs $71,737, for a total annual per-patient cost of $119,654, nearly 2 times higher than reported costs for AD. Patients ≥65 years of age, with later stages of disease, and with bvFTD correlated with higher direct costs, while patients <65 years of age and men were associated with higher indirect costs. An FTD diagnosis produced a mean decrease in household income from $75,000 to $99,000 12 months before diagnosis to $50,000 to $59,999 12 months after diagnosis, resulting from lost days of work and early departure from the workforce.
conclusionsThe economic burden of FTD is substantial. Counting productivity-related costs, per-patient costs for FTD appear to be greater than per-patient costs reported for AD. There is a need for biomarkers for accurate and timely diagnosis, effective treatments, and services to reduce this socioeconomic burden.
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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.