@article{0296ed9f1f9d4738a0cb480d632fd3a6,
title = "The contribution of behavioral features to caregiver burden in FTLD spectrum disorders",
abstract = "Introduction: Caregivers 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. Methods: In 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. Results: Apathy 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.",
keywords = "apathy, behavioral symptoms, caregiver burden, dementia, disinhibition, frontotemporal dementia, frontotemporal lobar degeneration, neurodegeneration",
author = "{the ALLFTD consortium} and Silverman, {Hannah E.} and Ake, {Jeannie M.} and Masood Manoochehri and Appleby, {Brian S.} and Danielle Brushaber and Devick, {Katrina L.} and Dickerson, {Bradford C.} and Fields, {Julie A.} and Forsberg, {Leah K.} and Nupur Ghoshal and Graff-Radford, {Neill R.} and Murray Grossman and Heuer, {Hilary W.} and John Kornak and Lapid, {Maria I.} and Irene Litvan and Mackenzie, {Ian R.} and Mendez, {Mario F.} and Onyike, {Chiadi U.} and Belen Pascual and Tartaglia, {Maria Carmela} and Boeve, {Bradley F.} and Boxer, {Adam L.} and Rosen, {Howard J.} and Stephanie Cosentino and Huey, {Edward D.} and Barker, {Megan S.} and Goldman, {Jill S.}",
note = "Funding Information: B.S. Appleby: Has received research funding from CDC, NIH, Ionis, and Alector. Consulting for Acadia and Ionis. Received royalties from Wolters Kluwer. Received payment for expert testimony for Kaufman & Canoles. Received support for meetings/travel from the CJD Foundation. Holds unpaid leadership roles for the Alzheimer's Association and CJD Foundation. Funding Information: Data collection and dissemination of the data presented in this article were supported by the ARTFL‐LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) Consortium (U19: AG063911, funded by the National Institute on Aging and the National Institute of Neurological Disorders and Stroke) and the former Advancing Research and Treatment of Frontotemporal Lobar Degeneration (ARTFL) & Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS) Consortia (ARTFL: U54 NS092089, funded by the National Institute of Neurological Disorders and Stroke and National Center for Advancing Translational Sciences; LEFFTDS: U01 AG045390, funded by the National Institute on Aging and the National Institute of Neurological Disorders and Stroke). The manuscript has been reviewed by the ALLFTD Executive Committee for scientific content. Additional thanks to Dr. Jordan Dworkin for providing statistical consultation. The authors acknowledge the invaluable contributions of the study participants and families as well as the assistance of the support staff at each participating site. Funding Information: J.A. Fields: Receives research funding from the NIH (NIH/NIA ‐ U54AG 44170‐8; institution NIH/NINDS ‐ UH3NS 95495‐4; institution NIH/NINDS ‐ U01NS 100620‐4; institution NIH/NIA ‐ RF1AG 57547‐4; institution NIH/NIA ‐ U19AG 63911‐2; institution NIH/NIA ‐ R01AG 68128‐1; institution NIH/NIA ‐ R44AG 65088‐2; institution NIH/NIA ‐ U01AG 45390‐5; institution NIH/NIA ‐ R43AG 65088‐1; institution PCORI ‐ R43AG 65088‐1; institution). Received ExercisAbilities as direct payment for lecture. Paid member of the NIA SWAN‐Aging DSMB. Funding Information: I.R. Mackenzie: Scientific advisory board member for Prevail Therapeutics. Patent license paid by Prevail Therapeutics. Receives institutional funding from the Alzheimer's Association. Received honorarium for plenary talk at Canadian Association of Neuropathologists annual meeting, 2019. Travel costs reimbursed to attend Canadian Association of Neuropathologists annual meeting as plenary speaker. Funding Information: B. Pascual: Receives funding from the NIH (R01 AG054131‐Institution U19 AG063911‐Institution R01 AG068260‐Institution). Funding Information: Bradford C. Dickerson: Receives support from funding by the NIH. Received royalties for book publishing from Oxford University Press and Cambridge University Press. Received consulting fees for participation in Senior Advisory Boards for Acadia, Alector, Arkuda, Biogen, Denali, Lilly, Merck, Novartis, Takeda, and Wave Lifesciences. Received consulting fees from continuing medical education companies for lectures from Projects in Knowledge, InTouch Media. Chair‐elect for Medical Advisory Council, Association for FTD (unpaid); Chair, Medical and Scientific Advisory Council, MA/NH Chapter, Alzheimer's Association (unpaid). Funding Information: I. Litvan: Supported by NIH grants: 2R01AG038791‐06A, U01NS090259, U01NS100610, U01NS80818, R25NS098999, P20GM109025; U19 AG063911‐1, and 1R21NS114764‐01A1; the Michael J Fox Foundation, Parkinson Foundation, Lewy Body Association, Roche, Abbvie, Biogen, Centogene, EIP‐Pharma, and Biohaven Pharmaceuticals. She was a member of the Scientific Advisory Board of Lundbeck and is a Scientific advisor for Amydis. She receives her salary from the University of California San Diego and as Chief Editor of . Frontiers in Neurology Funding Information: C.U. Onyike: Research support from the NIH, National Ataxia Foundation, Bluefield Foundation, Biogen Inc., Alector, the Jane Tanger Black Fund for Young‐Onset Dementias, and the Robert and Nancy Hall Brain Research Fund. Is a consultant for Acadia Pharmaceuticals and Alector Inc. Provided paid expert testimony for GOODELL, DEVRIES, LEECH & DANN, LLP. Holds unpaid leadership roles on the ISFTD and AFTD. Funding Information: A.L. Boxer: Receives research support from NIH, the Tau Research Consortium, the Association for Frontotemporal Degeneration, the Rainwater Charitable Foundation, the Alzheimer's Association, and the Bluefield Project to Cure Frontotemporal Dementia. He has served as a consultant for AGTC, Alector, Arkuda, Arvinas, Bioage, Ionis, Lundbeck, Passage BIO, Samumed, Ono, Sangamo, Stealth, Transposon, UCB, Wave, Oligomerix, Roche, AGTC, AZTherapies, and GSK; and has received research support from Avid, Eisai, Biogen, and Roche. Holds stock in Alector, Arvinas, Arkuda, and AZTherapies. Funding Information: S. Cosentino: Receives funding from the NIH (R01 AG054525; R01 NS086736; U19 AG063893; R25AG059557; R01 MH120794; 5P50AG008702; 2R01AG007370; U24AG056270; R01AG058918; R01AG064614; and U19AG063911). Receives consulting fees from SAGE Pharmaceuticals, the Association for Frontotemporal Degeneration, and the NIH‐funded Pre‐symptomatic Familial ALS study. Received honoraria for speaking at the University of Bern as part of a graduate training seminar. Travel to scientific meetings is supported by NIH grant funding. Funding Information: J. Goldman: Receives research support from NIH, HDSA, and the New York State Department of Health (RFA #1510130358). Funding Information: M. Grossman: Support from NIH (AG0066597, AG054519, AG066418, AG052943), Department of Army, Newhouse Foundation, Wyncote Foundation, Peisach Family Foundation, and Robinson Family Foundation; consultant to Bracco and Passage Bio; participation in trials sponsored by Avid Radiopharmaceuticals, Life Molecular imaging, Biogen, Passage Bio, Prevail, and Alector. Funding Information: H. Rosen: Has received research support from Biogen Pharmaceuticals, has consulting agreements with Wave Neuroscience and Ionis Pharmaceuticals, has received consulting fees from Biogen, and receives research support from the NIH and CA DPH. Unpaid member of a DSMB for Oregon Health Sciences University. Publisher Copyright: {\textcopyright} 2021 the Alzheimer's Association.",
year = "2022",
month = sep,
doi = "10.1002/alz.12494",
language = "English (US)",
volume = "18",
pages = "1635--1649",
journal = "Alzheimer's and Dementia",
issn = "1552-5260",
publisher = "Elsevier",
number = "9",
}