Brain & Mind Centre, The University of Sydney, Camperdown, Australia.
Sydney Medical School, The University of Sydney, Camperdown, Australia.
Amyotroph Lateral Scler Frontotemporal Degener. 2021 Aug;22(5-6):434-441. doi: 10.1080/21678421.2020.1867180. Epub 2021 Jan 13.
: Amyotrophic lateral sclerosis (ALS) is a multisystem neurodegenerative disorder which includes cognitive and behavioral symptoms akin to frontotemporal dementia (FTD). Despite the necessity of caregiver intervention to assist with the management of cognitive and behavioral symptoms, there has been a lack of research on the topic. A focus on caregiver coping may offer a promising foundation to guide the development of interventions as part of ALS care. Accordingly, the aim of the present study was to examine the relationships between caregiver coping, psychological morbidity and burden of care in the context of ALS cognitive and behavioral symptoms. : Fifty-five patient-caregiver dyads were recruited from specialized ALS and FTD clinics. Specific coping strategies were examined using the COPE Inventory/Brief COPE and psychological morbidity and burden were assessed using the Depression, Anxiety, and Stress Scale-21 and Zarit Burden Interview. The relationship between coping, psychological morbidity and burden of care were analyzed using univariate and multivariate methods. : High-burden caregivers were more likely to be caring for patients with a diagnosis of ALS-FTD ( =.0001). Caregivers used problem-focused strategies (particularly planning) more frequently ( = 71.4, SD = 15.3) compared to emotion-focused ( = 60.8, SD = 12.3) and dysfunctional coping strategies ( = 42.2, SD = 8.6). A diagnosis of ALS-FTD (=.0001) and problem-focused strategies (=.024) emerged as significant predictors of caregiver burden. Caregiver anxiety, depression and stress were not predictive of caregiver burden (=.151). : Timely provision of caregiver support optimizing problem-focused coping strategies as part of multidisciplinary ALS care, particularly for caregivers of ALS-FTD patients may mitigate caregiver burden.
肌萎缩侧索硬化症(ALS)是一种多系统神经退行性疾病,包括类似于额颞叶痴呆(FTD)的认知和行为症状。尽管需要护理人员进行干预以协助管理认知和行为症状,但对此主题的研究却很少。关注护理人员的应对方式可能为指导干预措施的制定提供有希望的基础,作为 ALS 护理的一部分。因此,本研究旨在探讨 ALS 认知和行为症状背景下护理人员应对方式、心理病态和护理负担之间的关系。
从专门的 ALS 和 FTD 诊所招募了 55 对患者-护理人员二人组。使用 COPE 库存/简短 COPE 检查特定的应对策略,使用抑郁、焦虑和压力量表-21 和 Zarit 负担访谈评估心理病态和负担。使用单变量和多变量方法分析应对、心理病态和护理负担之间的关系。
高负担的护理人员更有可能照顾被诊断为 ALS-FTD 的患者(=.0001)。与情绪聚焦( = 60.8,SD = 12.3)和功能失调的应对策略( = 42.2,SD = 8.6)相比,护理人员更频繁地使用问题聚焦策略(特别是计划)( = 71.4,SD = 15.3)。ALS-FTD 的诊断(=.0001)和问题聚焦策略(=.024)是护理人员负担的显著预测因子。护理人员的焦虑、抑郁和压力与护理人员负担无关( = .151)。
作为多学科 ALS 护理的一部分,及时为护理人员提供支持,优化问题聚焦应对策略,特别是针对 ALS-FTD 患者的护理人员,可能会减轻护理人员的负担。