The contribution of behavioral features to caregiver burden in FTLD spectrum disorders

Hannah E Silverman; Jeannie M Ake; Masood Manoochehri; Brian S Appleby; Danielle Brushaber; Katrina L Devick; Bradford C Dickerson; Julie A Fields; Leah K Forsberg; Nupur Ghoshal; Neill R Graff-Radford; Murray Grossman; Hilary W Heuer; John Kornak; Maria I Lapid; Irene Litvan; Ian R Mackenzie; Mario F Mendez; Chiadi U Onyike; Belen Pascual; Maria Carmela Tartaglia; Bradley F Boeve; Adam L Boxer; Howard J Rosen; Stephanie Cosentino; Edward D Huey; Megan S Barker; Jill S Goldman; ALLFTD consortium

doi:10.1002/alz.12494

The contribution of behavioral features to caregiver burden in FTLD spectrum disorders

Alzheimers Dement. 2022 Sep;18(9):1635-1649. doi: 10.1002/alz.12494. Epub 2021 Dec 2.

Authors

Hannah E Silverman¹, Jeannie M Ake¹, Masood Manoochehri¹, Brian S Appleby², Danielle Brushaber³, Katrina L Devick³, Bradford C Dickerson⁴, Julie A Fields⁵, Leah K Forsberg⁶, Nupur Ghoshal⁷, Neill R Graff-Radford⁸, Murray Grossman⁹, Hilary W Heuer¹⁰, John Kornak¹¹, Maria I Lapid⁵, Irene Litvan¹², Ian R Mackenzie¹³, Mario F Mendez^{14

15}, Chiadi U Onyike¹⁶, Belen Pascual¹⁷, Maria Carmela Tartaglia¹⁸, Bradley F Boeve⁶, Adam L Boxer¹⁰, Howard J Rosen¹⁰, Stephanie Cosentino¹, Edward D Huey^{1

19}, Megan S Barker¹, Jill S Goldman¹; ALLFTD consortium

Affiliations

¹ Taub 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.
² Department of Neurology, Case Western Reserve University, Cleveland, Ohio, USA.
³ Division of Clinical Trials and Biostatistics, Department of Quantitative Health Sciences, Mayo Clinic, Rochester, Minnesota, USA.
⁴ Department of Neurology, Frontotemporal Disorders Unit, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts, USA.
⁵ Division of Neurocognitive Disorders, Department of Psychiatry and Psychology, Mayo Clinic, Rochester, Minnesota, USA.
⁶ Department of Neurology, Mayo Clinic, Rochester, Minnesota, USA.
⁷ Department of Neurology, Washington University, St. Louis, Missouri, USA.
⁸ Department of Neurology, Mayo Clinic, Jacksonville, Florida, USA.
⁹ Penn Frontotemporal Degeneration Center, Department of Neurology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania, USA.
¹⁰ Department of Neurology, Memory and Aging Center, University of California, San Francisco, San Francisco, California, USA.
¹¹ Department of Epidemiology and Biostatistics, University of California, San Francisco, San Francisco, California, USA.
¹² Department of Neuroscience, University of California, San Diego, San Diego, California, USA.
¹³ Department of Pathology and Laboratory Medicine, University of British Columbia, Vancouver, British Columbia, Canada.
¹⁴ Department of Neurology, University of California, Los Angeles, California, USA.
¹⁵ Department of Psychiatry and Biobehavioral Sciences, University of California, Los Angeles, Los Angeles, California, USA.
¹⁶ Division of Geriatric Psychiatry and Neuropsychiatry, Department of Psychiatry and Behavioral Sciences, Johns Hopkins University, Baltimore, Maryland, USA.
¹⁷ Stanley H. Appel Department of Neurology, Houston Methodist Hospital, Weill Cornell Medicine, Houston Methodist Neurological and Research Institute, Houston, Texas, USA.
¹⁸ Division of Neurology, Department of Medicine, University of Toronto, Toronto, Ontario, Canada.
¹⁹ Department of Psychiatry and New York Psychiatric Institute, Columbia University Medical Center, New York, USA.

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.

Publication types

Research Support, N.I.H., Extramural

MeSH terms

Apathy*
Caregiver Burden
Caregivers / psychology
Frontotemporal Dementia* / psychology
Frontotemporal Lobar Degeneration* / psychology
Humans

Abstract

Publication types

MeSH terms

Grants and funding