Progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS) progress relentlessly and lead to a need for care. Caregiving is often burdensome. Little is known about the course of caregiver burden (CB) in PSP and CBS patients. Longitudinal analysis of CB in family members caring for PSP and CBS patients. Single-center longitudinal pilot study in 68 newly diagnosed patients with probable PSP and CBS (52 Richardson’s syndrome; 1 progressive gait freezing of PSP; 15 CBS). Demographic, educational, occupational parameters, family status, motor functions (UPDRSIII, Hoehn and Yahr Score, Tinetti) and neuropsychological performance (CERAD Plus, Frontal Assessment Battery) were assessed, as well as behavioral and neuropsychiatric impairments (Frontal Behavioral Inventory, Neuropsychiatric Inventory), activities of daily living (ADL) and caregiver burden using the Caregiver Strain Index (CSI), in most patients also the Zarit Burden Interview (ZBI). Patients were followed up every 6 months for up to 2 years. Caregivers reported mild to moderate CB at baseline, which increased by 25–30% in 2 years and was significantly greater in PSP than in CBS. Risk for mental health problems increased over time, especially in female caregivers (depression). Important patient-related factors were apathy, aspontaneity, depression, irritability, disorganization, poor judgment, impairment of language, impairments in ADL, a high educational level of the patient and close family relationship. Behavioral symptoms and impaired ADL are the main patient-related factors of CB in PSP and CBS. CB can be severe and needs to be assessed repeatedly from the time of diagnosis to provide comprehensive support.

进行性核上性麻痹 (PSP) 和皮质基底节综合征 (CBS) 不断发展并导致需要护理。看护通常是繁重的。对 PSP 和 CBS 患者的照顾者负担 (CB) 的过程知之甚少。照顾 PSP 和 CBS 患者的家庭成员中 CB 的纵向分析。在 68 名新诊断的可能患有 PSP 和 CBS 的患者（52 名理查森综合征；1 名 PSP 进行性步态冻结；15 名 CBS）中进行的单中心纵向试点研究。评估人口统计学、教育、职业参数、家庭状况、运动功能（UPDRSIII、Hoehn 和 Yahr 评分、Tinetti）和神经心理表现（CERAD Plus、正面评估电池），以及行为和神经精神障碍（正面行为量表、神经精神量表） ), 日常生活活动 (ADL) 和照顾者负担使用照顾者压力指数 (CSI)，在大多数患者中也是 Zarit 负担访谈 (ZBI)。每 6 个月对患者进行一次长达 2 年的随访。护理人员报告基线时为轻度至中度 CB，在 2 年内增加了 25-30%，并且在 PSP 中显着高于在 CBS 中。心理健康问题的风险随着时间的推移而增加，尤其是女性看护者（抑郁症）。与患者相关的重要因素是冷漠、自发性、抑郁、易怒、杂乱无章、判断力差、语言障碍、ADL 障碍、患者的高教育水平和亲密的家庭关系。行为症状和 ADL 受损是 PSP 和 CBS 中 CB 的主要患者相关因素。