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 Mendez14,15, Chiadi U Onyike16, Belen Pascual17, Maria Carmela Tartaglia18, Bradley F Boeve6, Adam L Boxer10, Howard J Rosen10, Stephanie Cosentino1, Edward D Huey1,19, Megan S Barker1, Jill S Goldman1. 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.
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.
Authors: Marilyn S Albert; Steven T DeKosky; Dennis Dickson; Bruno Dubois; Howard H Feldman; Nick C Fox; Anthony Gamst; David M Holtzman; William J Jagust; Ronald C Petersen; Peter J Snyder; Maria C Carrillo; Bill Thies; Creighton H Phelps Journal: Alzheimers Dement Date: 2011-04-21 Impact factor: 21.566
Authors: Tiffany W Chow; Jonathan D Fridhandler; Malcolm A Binns; Albert Lee; Jennifer Merrilees; Howie J Rosen; Robin Ketelle; Bruce L Miller Journal: J Alzheimers Dis Date: 2012 Impact factor: 4.472
Authors: Sharpley Hsieh; Cristian E Leyton; Jashelle Caga; Emma Flanagan; Cassandra Kaizik; Claire M O'Connor; Matthew C Kiernan; John R Hodges; Olivier Piguet; Eneida Mioshi Journal: J Alzheimers Dis Date: 2016 Impact factor: 4.472
Authors: Toji Miyagawa; Danielle Brushaber; Jeremy Syrjanen; Walter Kremers; Julie Fields; Leah K Forsberg; Hilary W Heuer; David Knopman; John Kornak; Adam Boxer; Howard J Rosen; Bradley F Boeve; Brian Appleby; Yvette Bordelon; Jessica Bove; Patrick Brannelly; Christina Caso; Giovanni Coppola; Reilly Dever; Christina Dheel; Bradford Dickerson; Susan Dickinson; Sophia Dominguez; Kimiko Domoto-Reilly; Kelley Faber; Jessica Ferrell; Ann Fishman; Jamie Fong; Tatiana Foroud; Ralitza Gavrilova; Debra Gearhart; Behnaz Ghazanfari; Nupur Ghoshal; Jill S Goldman; Jonathan Graff-Radford; Neill Graff-Radford; Ian Grant; Murray Grossman; Dana Haley; Robin Hsiung; Edward Huey; David Irwin; David Jones; Lynne Jones; Kejal Kantarci; Anna Karydas; Daniel Kaufer; Diana Kerwin; Ruth Kraft; Joel Kramer; Walter Kukull; Irene Litvan; Diane Lucente; Codrin Lungu; Ian Mackenzie; Miranda Maldonado; Masood Manoochehri; Scott McGinnis; Emily McKinley; Mario F Mendez; Bruce Miller; Namita Multani; Chiadi Onyike; Jaya Padmanabhan; Alexander Pantelyat; Rodney Pearlman; Leonard Petrucelli; Madeline Potter; Rosa Rademakers; Eliana M Ramos; Kate Rankin; Katya Rascovsky; Erik D Roberson; Emily Rogalski; Pheth Sengdy; Leslie Shaw; Maria C Tartaglia; Nadine Tatton; Joanne Taylor; Arthur Toga; John Q Trojanowski; Ping Wang; Sandra Weintraub; Bonnie Wong; Zbigniew Wszolek Journal: Alzheimers Dement Date: 2020-01 Impact factor: 21.566
Authors: John Kornak; Julie Fields; Walter Kremers; Sara Farmer; Hilary W Heuer; Leah Forsberg; Danielle Brushaber; Amy Rindels; Hiroko Dodge; Sandra Weintraub; Lilah Besser; Brian Appleby; Yvette Bordelon; Jessica Bove; Patrick Brannelly; Christina Caso; Giovanni Coppola; Reilly Dever; Christina Dheel; Bradford Dickerson; Susan Dickinson; Sophia Dominguez; Kimiko Domoto-Reilly; Kelley Faber; Jessica Ferrall; Ann Fishman; Jamie Fong; Tatiana Foroud; Ralitza Gavrilova; Deb Gearhart; Behnaz Ghazanfari; Nupur Ghoshal; Jill Goldman; Jonathan Graff-Radford; Neill Graff-Radford; Ian M Grant; Murray Grossman; Dana Haley; John Hsiao; Robin Hsiung; Edward D Huey; David Irwin; David Jones; Lynne Jones; Kejal Kantarci; Anna Karydas; Daniel Kaufer; Diana Kerwin; David Knopman; Ruth Kraft; Joel Kramer; Walter Kukull; Maria Lapid; Irene Litvan; Peter Ljubenkov; Diane Lucente; Codrin Lungu; Ian Mackenzie; Miranda Maldonado; Masood Manoochehri; Scott McGinnis; Emily McKinley; Mario Mendez; Bruce Miller; Namita Multani; Chiadi Onyike; Jaya Padmanabhan; Alexander Pantelyat; Rodney Pearlman; Len Petrucelli; Madeline Potter; Rosa Rademakers; Eliana Marisa Ramos; Katherine Rankin; Katya Rascovsky; Erik D Roberson; Emily Rogalski-Miller; Pheth Sengdy; Les Shaw; Adam M Staffaroni; Margaret Sutherland; Jeremy Syrjanen; Carmela Tartaglia; Nadine Tatton; Joanne Taylor; Arthur Toga; John Trojanowski; Ping Wang; Bonnie Wong; Zbigniew Wszolek; Brad Boeve; Adam Boxer; Howard Rosen Journal: Alzheimers Dement (Amst) Date: 2019-12-05
Authors: 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 Journal: Alzheimers Dement Date: 2021-12-02 Impact factor: 16.655