Sharpley Hsieh1,2,3, Cristian E Leyton2,3,4, Jashelle Caga1, Emma Flanagan2, Cassandra Kaizik2, Claire M O'Connor5, Matthew C Kiernan1, John R Hodges2,3, Olivier Piguet2,3, Eneida Mioshi1,6. 1. Brain and Mind Research Centre, Sydney, Australia. 2. Neuroscience Research Australia, Sydney, Australia. 3. ARC Centre of Excellence in Cognition and its Disorders, University of New South Wales, Australia. 4. Faculty of Health Sciences, The University of Sydney, Australia. 5. Aging, Work & Health Research Unit, University of Sydney, Australia. 6. Department of Psychiatry, Cambridge University, Cambridge, UK.
Abstract
BACKGROUND AND AIMS: Frontotemporal dementia (FTD) and amyotrophic lateral sclerosis (ALS) represent a disease spectrum. Caregiver burden in subtypes of FTD has not yet been directly compared with those patients who have co-existent FTD and ALS (ALSFTD). METHOD: Perceived caregiver burden was evaluated using the short Zarit Burden Interview (ZBI) in patients with behavioral-variant FTD (bvFTD, n = 21), semantic dementia (SD, n = 18), and ALSFTD (n = 15) at the initial clinical presentation and follow-up assessments. The Mini-Addenbrooke's Cognitive Examination (M-ACE) and the Motor Neuron Disease Behaviour Scale (MiND-B) were also used. Linear mixed effects models examined longitudinal changes on the ZBI, M-ACE, and MiND-B across groups. RESULTS: Burden at baseline was highest for the bvFTD group. Longitudinally, perceived burden increased for the SD and ALSFTD groups whereas in bvFTD, the level of burden which was high at baseline and remained high with disease progression. The severity of abnormal behaviors at baseline, as assessed by the MiND-B, correlated with baseline levels of caregiver burden and further accounted for 23% of the variance in caregiver burden at clinical follow-up. CONCLUSIONS: The trajectory of perceived burden differs across the FTD-ALS spectrum, with SD and ALSFTD caregivers demonstrating an increased burden that develops over time, compared to a persistently high level for bvFTD caregivers, evident throughout the disease course. The evolution of burden in these three syndromes likely reflects the initial presentation and clinical characterization that develops with time. Psycho-education programs for caregivers, which provide better coping strategies for challenging behaviors, may reduce levels of burden experienced with disease progression.
BACKGROUND AND AIMS: Frontotemporal dementia (FTD) and amyotrophic lateral sclerosis (ALS) represent a disease spectrum. Caregiver burden in subtypes of FTD has not yet been directly compared with those patients who have co-existent FTD and ALS (ALSFTD). METHOD: Perceived caregiver burden was evaluated using the short Zarit Burden Interview (ZBI) in patients with behavioral-variant FTD (bvFTD, n = 21), semantic dementia (SD, n = 18), and ALSFTD (n = 15) at the initial clinical presentation and follow-up assessments. The Mini-Addenbrooke's Cognitive Examination (M-ACE) and the Motor Neuron Disease Behaviour Scale (MiND-B) were also used. Linear mixed effects models examined longitudinal changes on the ZBI, M-ACE, and MiND-B across groups. RESULTS: Burden at baseline was highest for the bvFTD group. Longitudinally, perceived burden increased for the SD and ALSFTD groups whereas in bvFTD, the level of burden which was high at baseline and remained high with disease progression. The severity of abnormal behaviors at baseline, as assessed by the MiND-B, correlated with baseline levels of caregiver burden and further accounted for 23% of the variance in caregiver burden at clinical follow-up. CONCLUSIONS: The trajectory of perceived burden differs across the FTD-ALS spectrum, with SD and ALSFTD caregivers demonstrating an increased burden that develops over time, compared to a persistently high level for bvFTD caregivers, evident throughout the disease course. The evolution of burden in these three syndromes likely reflects the initial presentation and clinical characterization that develops with time. Psycho-education programs for caregivers, which provide better coping strategies for challenging behaviors, may reduce levels of burden experienced with disease progression.
Authors: Mônica S Yassuda; Thais B Lima da Silva; Claire M O'Connor; Shailaja Mekala; Suvarna Alladi; Valeria S Bahia; Viviane Amaral-Carvalho; Henrique C Guimaraes; Paulo Caramelli; Marcio L F Balthazar; Benito Damasceno; Sonia M D Brucki; Ricardo Nitrini; John R Hodges; Olivier Piguet; Eneida Mioshi Journal: Neurol Clin Pract Date: 2018-04
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
Authors: Claire M O'Connor; Lindy Clemson; Michael Hornberger; Cristian E Leyton; John R Hodges; Olivier Piguet; Eneida Mioshi Journal: Neurol Clin Pract Date: 2016-10