Introduction: Caregivers of patients with early-onset dementia (EOD) experience high levels of burden, which is known to be affected by caregivers’ psychological features as well as by patients’ and caregivers’ demographical and social variables. Although potential clinical, demographical, and social determinants have been separately examined, it is not known how they reciprocally interact. Methods: Ninety-two consecutive patient-caregiver dyads were recruited from the Cognitive Neurology Clinics of Modena, Northern Italy. Caregivers were asked to fill in questionnaires regarding their burden, psychological distress, and family economic status. Data were analyzed with multivariable regression models and then entered in a mediation model. Results: Caregiver burden was positively related to female caregiver sex, spousal relationship to the patient, severity of patient’s behavioral symptoms, diagnostic delay, and financial distress of the family. It was negatively related to disease duration, patient’s education, region of birth, caregiver age, number of caregiver’s days off work, number of offspring, and caregiver perception of patient’s quality of life. While the effect of caregiver age, diagnostic delay, and of proxies of family or social network directly impacted on caregiver’s burden, the effect of patient’s disease duration, being a wife caregiver, financial distress, and number of caregiver’s days off work was entirely mediated by the level of caregiver psychological distress. Conclusions: Both direct actions (such as increasing social networks and shortening diagnostic delay) and indirect actions aimed at reducing psychological distress (such as increasing the number of caregiver’s days off work and financial support) should be planned to reduce caregiver’s burden.
Dement Geriatr Cogn Disord Extra 2021;11:189–197

中文翻译：

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早发性痴呆中照顾者负担的决定因素

简介：早发性痴呆 (EOD) 患者的护理人员承受着高水平的负担，众所周知，这受到护理人员的心理特征以及患者和护理人员的人口统计和社会变量的影响。尽管潜在的临床、人口统计和社会决定因素已分别进行了检查，但尚不清楚它们如何相互作用。方法：从意大利北部摩德纳的认知神经病学诊所招募了 92 名连续的患者-照顾者二人组。照顾者被要求填写有关他们的负担、心理困扰和家庭经济状况的问卷。使用多变量回归模型分析数据，然后输入中介模型。结果：照顾者负担与女性照顾者性别、与患者的配偶关系、患者行为症状的严重程度、诊断延误和家庭经济困难呈正相关。它与病程、患者受教育程度、出生地区、看护者年龄、看护者休假天数、后代数量、看护者对患者生活质量的感知呈负相关。虽然看护者年龄、诊断延迟以及家庭或社会网络的代理人直接影响看护者的负担，但患者的疾病持续时间、作为妻子看护者、经济困难和看护者休假天数的影响完全由以下因素调节照顾者心理困扰的程度。结论：应该计划直接行动（例如增加社交网络和缩短诊断延迟）和旨在减少心理困扰的间接行动（例如增加看护者的休假天数和经济支持）以减轻看护者的负担。
Dement Geriatr Cogn Disord Extra 2021;11:189–197