ArticleAlzheimer's & dementia : the journal of the Alzheimer's Association2022
The contribution of behavioral features to caregiver burden in FTLD spectrum disorders.
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Article in Alzheimer's & dementia : the journal of the Alzheimer's Association, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers.
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19citing papers in PubMed
2.7field-weighted citation impact, top 9% of its field
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Who cites it
19 citing papers in PubMed, 27 citations in OpenAlex.
- Feasibility and tolerability of low-dose lithium for the treatment of agitation and abnormal motor behaviors in Frontotemporal Dementia.International review of psychiatry (Abingdon, England) · 2025Trial
- Intranasal oxytocin for apathy in people with frontotemporal dementia (FOXY): a multicentre, randomised, double-blind, placebo-controlled, adaptive, crossover, phase 2a/2b superiority trial.The Lancet. Neurology · 2025Trial
- Behavioural and psychological symptom determinants of carer burden across clinical syndromes associated with frontotemporal lobar degeneration and Alzheimer's disease: a transdiagnostic analysis.Journal of neurology · 2026Article
- STELLA-FTD: Examination of a Behavior Change Intervention for Frontotemporal Dementia Family Care Partners.Alzheimer's & dementia. Behavior & socioeconomics of aging · 2026Article
- Hyperorality in Frontotemporal Dementia: How Psychiatric and Neural Correlates Change During the Disease Course.The Journal of neuropsychiatry and clinical neurosciences · 2026Article
- Examining neuropsychiatric symptoms and functional decline in behavioral variant frontotemporal dementia.International review of psychiatry (Abingdon, England) · 2025Article
- Neuropsychiatric symptoms cluster and fluctuate over time in behavioral variant frontotemporal dementia.Psychiatry and clinical neurosciences · 2025Article
- Caregiving in the face of empathy loss in Frontotemporal Dementia: an integrative review.Aging & mental health · 2025Review
- The spectrum of behavioral disorders in amyotrophic lateral sclerosis: current view.Journal of neural transmission (Vienna, Austria : 1996) · 2025Review
- Neuropsychiatric Symptoms Cluster and Fluctuate Over Time in Behavioral Variant Frontotemporal Dementia.medRxiv : the preprint server for health sciences · 2024Article
- Clinical implications of head trauma in frontotemporal dementia and primary progressive aphasia.Alzheimer's research & therapy · 2024Article
- 'A lightbulb moment': carers' experiences of behavioural symptoms in motor neurone disease before and after MiNDToolkit.BMC neurology · 2024Article
- Identifying and Addressing Functional Communication Challenges in Patients With Behavioral Variant Frontotemporal Dementia.American journal of speech-language pathology · 2024Article
- Apathy in Lewy body disease and its effects on functional impairment over time.Frontiers in neurology · 2024Article
- Living With Frontotemporal Degeneration: Diagnostic Journey, Symptom Experiences, and Disease Impact.Journal of geriatric psychiatry and neurology · 2023Article
- The contribution of behavioral features to caregiver burden in FTLD spectrum disorders.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2022Article
- Extremely Early-Onset Frontotemporal Dementia: A Case Report and Literature Review.Journal of Alzheimer's disease : JAD · 2022Review
- 'There's no straight line…' a consumer-informed intervention for FTD family care partners: the STELLA-FTD pilot study.Aging & mental healthArticle
- Neuropsychiatric and behavioral symptom clusters in frontotemporal dementia.Journal of Alzheimer's disease reportsArticle
Corrections and comments
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Authors and funding
29 authors at 16 institutions in 2 countries.
Hannah E SilvermanTaub Institute for Research on Alzheimer's Disease and the Aging Brain and Gertrude H. Sergievsky Center, Department of Neurology, Columbia University Irving Medical Center, New York, New York, USA.
Jeannie M AkeTaub Institute for Research on Alzheimer's Disease and the Aging Brain and Gertrude H. Sergievsky Center, Department of Neurology, Columbia University Irving Medical Center, New York, New York, USA.
Masood ManoochehriTaub Institute for Research on Alzheimer's Disease and the Aging Brain and Gertrude H. Sergievsky Center, Department of Neurology, Columbia University Irving Medical Center, New York, New York, USA.
Brian S ApplebyDepartment of Neurology, Case Western Reserve University, Cleveland, Ohio, USA.
Danielle BrushaberDivision of Clinical Trials and Biostatistics, Department of Quantitative Health Sciences, Mayo Clinic, Rochester, Minnesota, USA.
Katrina L DevickDivision of Clinical Trials and Biostatistics, Department of Quantitative Health Sciences, Mayo Clinic, Rochester, Minnesota, USA.
Bradford C DickersonDepartment of Neurology, Frontotemporal Disorders Unit, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts, USA.
Julie A FieldsDivision of Neurocognitive Disorders, Department of Psychiatry and Psychology, Mayo Clinic, Rochester, Minnesota, USA.
Leah K ForsbergDepartment of Neurology, Mayo Clinic, Rochester, Minnesota, USA.
Nupur GhoshalDepartment of Neurology, Washington University, St. Louis, Missouri, USA.
Neill R Graff-RadfordDepartment of Neurology, Mayo Clinic, Jacksonville, Florida, USA.
Murray GrossmanPenn Frontotemporal Degeneration Center, Department of Neurology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
Hilary W HeuerDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, California, USA.
John KornakDepartment of Epidemiology and Biostatistics, University of California, San Francisco, San Francisco, California, USA.
Maria I LapidDivision of Neurocognitive Disorders, Department of Psychiatry and Psychology, Mayo Clinic, Rochester, Minnesota, USA.
Irene LitvanDepartment of Neuroscience, University of California, San Diego, San Diego, California, USA.
Ian R MackenzieDepartment of Pathology and Laboratory Medicine, University of British Columbia, Vancouver, British Columbia, Canada.
Mario F MendezDepartment of Neurology, University of California, Los Angeles, California, USA.
Chiadi U OnyikeDivision of Geriatric Psychiatry and Neuropsychiatry, Department of Psychiatry and Behavioral Sciences, Johns Hopkins University, Baltimore, Maryland, USA.
Belen PascualStanley H. Appel Department of Neurology, Houston Methodist Hospital, Weill Cornell Medicine, Houston Methodist Neurological and Research Institute, Houston, Texas, USA.
Maria Carmela TartagliaDivision of Neurology, Department of Medicine, University of Toronto, Toronto, Ontario, Canada.
Bradley F BoeveDepartment of Neurology, Mayo Clinic, Rochester, Minnesota, USA.
Adam L BoxerDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, California, USA.
Howard J RosenDepartment of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, California, USA.
Stephanie CosentinoTaub Institute for Research on Alzheimer's Disease and the Aging Brain and Gertrude H. Sergievsky Center, Department of Neurology, Columbia University Irving Medical Center, New York, New York, USA.
Edward D HueyTaub Institute for Research on Alzheimer's Disease and the Aging Brain and Gertrude H. Sergievsky Center, Department of Neurology, Columbia University Irving Medical Center, New York, New York, USA.
Megan S BarkerTaub Institute for Research on Alzheimer's Disease and the Aging Brain and Gertrude H. Sergievsky Center, Department of Neurology, Columbia University Irving Medical Center, New York, New York, USA.
Jill S GoldmanTaub Institute for Research on Alzheimer's Disease and the Aging Brain and Gertrude H. Sergievsky Center, Department of Neurology, Columbia University Irving Medical Center, New York, New York, USA.
ALLFTD consortium
Mayo Clinic · USColumbia University Irving Medical Center · USUniversity of California, San Francisco · USColumbia University · USCase Western Reserve University · USJacksonville College · USJohns Hopkins Medicine · USMassachusetts General Hospital · USMayo Clinic in Florida · USMethodist Hospital · USUniversity of British Columbia · CAUniversity of California, Los Angeles · USUniversity of California San Diego · USUniversity of Pennsylvania · USUniversity of Toronto · CAWashington University in St. Louis · US
Funding
Technology and Remote Assessment CoreU19AG063911 · NIA · MAYO CLINIC ROCHESTER · PI ADAM L. BOXER, Bradley F Boeve · 2019 to 2026
$120.9MNational Centralized Repository for Alzheimer's Disease and Related Dementias (NCRAD)U24AG021886 · NIA · INDIANA UNIV-PURDUE UNIV AT INDIANAPOLIS · PI TATIANA M. FOROUD · 2002 to 2026
$119.8MTDP-43 Loss-of-Function: Biology to BiomarkersP01AG019724 · NIA · UNIVERSITY OF PENNSYLVANIA · PI Jennifer Merrilees · 2002 to 2026
$67.2MThe National Institute on Aging (NIA) Late Onset of Alzheimer's Disease (LOAD) Family-Based Study (FBS)U24AG056270 · NIA · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI Gary Wayne Beecham, TATIANA M. FOROUD · 2017 to 2026
$31.4MResearch Education CoreP30AG066462 · NIA · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI Miguel Arce · 2020 to 2026
$30.1MResearch Education ComponentP30AG066507 · NIA · JOHNS HOPKINS UNIVERSITY · PI MARILYN S. ALBERT · 2020 to 2026
$29.3MThe Four Repeat Tauopathy Neuroimaging InitiativeR01AG038791 · NIA · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI BOXER, ADAM L. · 2010 to 2020
$18.1MLongitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS)U01AG045390 · NIA · MAYO CLINIC ROCHESTER · PI BOEVE, BRADLEY F, ROSEN, HOWARD J · 2014 to 2018
$16.9MTraining - The Frontotemporal Lobar Degeneration Clinical Research ConsortiumU54NS092089 · NINDS · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI BOXER, ADAM L. · 2014 to 2018
$6.4MGenetic basis of neuropsychiatric symptoms in Alzheimer's diseaseU01AG079850 · NIA · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI Gary Wayne Beecham, Edward D Huey · 2023 to 2026
$3.0MNeuroanatomical associations with the factor structure underlying neuropsychiatric symptoms in Alzheimer's diseaseR01AG062268 · NIA · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI HUEY, EDWARD D · 2018 to 2022
$2.5MUsing RDoC Negative and Positive Valence Paradigms to Investigate the Mechanisms of Neuropsychiatric Symptoms (NPS) in Alzheimer's Disease and Related DementiasR01MH120794 · NIMH · COLUMBIA UNIVERSITY HEALTH SCIENCES · PI HUEY, EDWARD D · 2019 to 2023
$2.1MNIA NIH HHS K24 AG045333NIA NIH HHS P01 AG019724NIA NIH HHS P30 AG066462NIA NIH HHS P30 AG066507NIA NIH HHS R01 AG038791NIA NIH HHS R01 AG062268NIA NIH HHS U01 AG045390NIA NIH HHS U01 AG079850NIA NIH HHS U19 AG063911NIA NIH HHS U24 AG021886NIA NIH HHS U24 AG056270NIMH NIH HHS R01 MH120794NINDS NIH HHS U54 NS092089
Abstract
introductionCaregivers of patients with frontotemporal lobar degeneration (FTLD) spectrum disorders experience tremendous burden, which has been associated with the neuropsychiatric and behavioral features of the disorders.
methodsIn a sample of 558 participants with FTLD spectrum disorders, we performed multiple-variable regressions to identify the behavioral features that were most strongly associated with caregiver burden, as measured by the Zarit Burden Interview, at each stage of disease.
resultsApathy and disinhibition, as rated by both clinicians and caregivers, as well as clinician-rated psychosis, showed the strongest associations with caregiver burden, a pattern that was consistent when participants were separated cross-sectionally by disease stage. In addition, behavioral features appeared to contribute most to caregiver burden in patients with early dementia. DISCUSSION: Caregivers should be provided with early education on the management of the behavioral features of FTLD spectrum disorders. Interventions targeting apathy, disinhibition, and psychosis may be most useful to reduce caregiver burden.
Indexed as
ApathyFrontotemporal DementiaFrontotemporal Lobar DegenerationCaregiver BurdenCaregiversHumansapathybehavioral symptomscaregiver burdendementiadisinhibitionfrontotemporal dementiafrontotemporal lobar degenerationneurodegeneration
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