Caregiver burden in amyotrophic lateral sclerosis is more dependent on patients' behavioral changes than physical disability: A comparative study

Lillo, Patricia, Mioshi, Eneida and Hodges, John R. (2012) Caregiver burden in amyotrophic lateral sclerosis is more dependent on patients' behavioral changes than physical disability: A comparative study. BMC Neurology, 12. ISSN 1471-2377

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Abstract

BACKGROUND: Behavioral changes in patients with amyotrophic lateral sclerosis (ALS) mirror those found in frontotemporal dementia (FTD). Considering the high rate of neuropsychiatric symptoms found in ALS patients, this paper examines whether caregiver burden is associated with behavioral changes over and above the physical disability of patients with ALS, and if the presence of caregivers' depression, anxiety and stress also impacts on caregiver burden. METHODS: 140 caregivers of patients with ALS participated in a postal survey investigating patients' neuropsychiatric symptoms (Cambridge Behaviour Inventory Revised CBI-R), motor function (Amyotrophic Lateral Sclerosis Functional Rating Scale Revised - ALSFRS-R), caregiver burden (Zarit Burden Interview), and caregiver mood (Depression, Anxiety and Stress Scale- DASS21). Seventy four percent of them were caregivers of patients with limb onset and 25.7% were caregivers of patients with bulbar onset. RESULTS: Moderate to severe behavioral changes were reported in 10-40% of patients with ALS. The levels of depression, anxiety and stress in the caregivers reached 20%. Burden was high in 48% of the caregivers. The strongest predictor of high caregiver burden was ALS patients' abnormal behavior rather than physical disability, with an odds ratio of 1.4, followed by caregivers' stress. CONCLUSIONS: Our study has identified that behavioral changes (e.g. disinhibition, impulsivity) and caregiver stress have greater impact on caregiver burden than level and pattern of physical disability.

Item Type:	Article
Uncontrolled Keywords:	psychological adaptation,adult,aged,psychology,psychology,psychology,cost of illness,psychology,female,humans,male,middle aged,psychology,psychology,surveys and questionnaires
Faculty \ School:	Faculty of Medicine and Health Sciences > School of Health Sciences
UEA Research Groups:	Faculty of Medicine and Health Sciences > Research Centres > Norwich Institute for Healthy Aging Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health
Depositing User:	LivePure Connector
Date Deposited:	09 Jul 2021 12:18
Last Modified:	19 Oct 2023 03:00
URI:	https://ueaeprints.uea.ac.uk/id/eprint/80500
DOI:	10.1186/1471-2377-12-156

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