Hergert Danielle C, Cimino Cynthia R
New Mexico Department of Health, Developmental Disabilities Supports Division, Albuquerque, NM, USA.
Deparment of Psychology, University of South Florida, Tampa, FL, USA.
Arch Clin Neuropsychol. 2021 Nov 20;36(8):1426–1437. doi: 10.1093/arclin/acab009. Epub 2021 Mar 16.
Huntington's disease (HD) is a genetic neurodegenerative condition that is characterized by cognitive, motor, and psychiatric dysfunction. The purpose of this study was to explore which disease characteristics influence caregiver burden in HD.
Fifty participants with HD and 50 of their caregivers participated in the study at the University of South Florida. Participants were administered a neuropsychological battery, the Unified Huntington's Disease Rating Scale (UHDRS) motor exam, and the Frontal Systems Behavior Scale (FrSBe) self-report. Caregivers completed the Caregiving Appraisal Scale and the FrSBe family-report.
There were significant correlations between caregiver burden and caregiver age and sex, UHDRS motor scores, cognitive functioning, and self and caregiver-reported FrSBe scores. The significant variables were entered into a regression model and explained 63.1% of the variance in caregiver burden scores. Caregiver age, cognitive functioning, and caregiver-reported FrSBe scores continued to be significant predictors of caregiver burden, whereas the other variables were no longer significant.
There were significant relationships between caregiver burden, cognitive functioning, and frontally mediated behaviors, but not motor scores. The results suggest that possible interventions for caregivers may include education to caregivers on how to cope with apathy/executive dysfunction and cognitive decline. Caregiver age was associated with burden, with younger age being associated with increased burden when controlling for symptom severity. This has implications for this population in that HD typically has a younger age of onset than other neurodegenerative diseases and therefore, these caregivers may be particularly at risk for caregiver burden.
亨廷顿舞蹈症（HD）是一种遗传性神经退行性疾病，其特征为认知、运动和精神功能障碍。本研究旨在探讨HD的哪些疾病特征会影响照料者负担。
50名HD患者及其50名照料者参与了南佛罗里达大学的这项研究。参与者接受了一套神经心理测试、统一亨廷顿舞蹈症评定量表（UHDRS）运动检查以及额叶系统行为量表（FrSBe）自评。照料者完成了照料评估量表和FrSBe家庭报告。
照料者负担与照料者年龄和性别、UHDRS运动评分、认知功能以及自评和照料者报告的FrSBe评分之间存在显著相关性。将这些显著变量纳入回归模型，该模型解释了照料者负担评分中63.1%的方差。照料者年龄、认知功能以及照料者报告的FrSBe评分仍然是照料者负担的显著预测因素，而其他变量不再显著。
照料者负担与认知功能以及额叶介导行为之间存在显著关系，但与运动评分无关。结果表明，针对照料者的可能干预措施可能包括对其进行关于如何应对冷漠/执行功能障碍和认知衰退的教育。照料者年龄与负担相关，在控制症状严重程度时，年龄较小与负担增加相关。这对这一人群具有启示意义，因为HD的发病年龄通常比其他神经退行性疾病更年轻，因此，这些照料者可能特别容易承受照料者负担。
