Abstract

Objective: 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. Methods: 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. Results: High-burden caregivers were more likely to be caring for patients with a diagnosis of ALS-FTD (p =.0001). Caregivers used problem-focused strategies (particularly planning) more frequently (M = 71.4, SD = 15.3) compared to emotion-focused (M = 60.8, SD = 12.3) and dysfunctional coping strategies (M = 42.2, SD = 8.6). A diagnosis of ALS-FTD (p=.0001) and problem-focused strategies (p=.024) emerged as significant predictors of caregiver burden. Caregiver anxiety, depression and stress were not predictive of caregiver burden (p=.151). Conclusions: 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.

摘要

目的：肌萎缩性侧索硬化症（ALS）是一种多系统神经退行性疾病，包括类似于额颞痴呆（FTD）的认知和行为症状。尽管有必要采取护理人员干预措施来帮助管理认知和行为症状，但仍缺乏有关该主题的研究。关注照顾者应对可能会为ALS护理的一部分提供指导，以指导干预措施的发展。因此，本研究的目的是研究在ALS认知和行为症状的情况下，照料者应对，心理疾病和护理负担之间的关系。方法：从专门的ALS和FTD诊所招募了55位患者护理者二元组。使用COPE清单/简短COPE检查了特定的应对策略，并使用抑郁，焦虑和压力量表21和Zarit Burden访谈评估了心理发病率和负担。使用单变量和多变量方法分析应对，心理发病率和护理负担之间的关系。结果：高负担护理人员更有可能照顾被诊断为ALS-FTD的患者（p = .0001）。 与以情绪为重点（M  = 60.8，SD = 12.3）和功能失调的应对策略（M = 70.8，SD = 12.3）相比，护理人员更频繁地使用针对问题的策略（尤其是计划）（M = 71.4，SD = 15.3）。M  = 42.2，SD = 8.6）。ALS-FTD的诊断（p = .0001）和针对问题的策略（p = .024）成为护理人员负担的重要预测指标。照料者的焦虑，抑郁和压力并不能预测照料者的负担（p = .151）。结论：作为多学科ALS护理的一部分，及时提供护理人员支持优化针对问题的应对策略，尤其是对于ALS-FTD患者的护理人员而言，可以减轻护理人员的负担。