Chiari Annalisa, Pistoresi Barbara, Galli Chiara, Tondelli Manuela, Vinceti Giulia, Molinari Maria Angela, Addabbo Tindara, Zamboni Giovanna
U.O. Neurologia, Azienda Ospedaliero Universitaria di Modena, Modena, Italy.
Dipartimento di Economia Marco Biagi, Università di Modena e Reggio Emilia, Modena, Italy.
Dement Geriatr Cogn Dis Extra. 2021 Aug 13;11(2):189-197. doi: 10.1159/000516585. eCollection 2021 May-Aug.
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.
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.
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.
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.
早发性痴呆症（EOD）患者的照料者负担水平较高，已知这种负担会受到照料者心理特征以及患者和照料者的人口统计学和社会变量的影响。尽管已经分别研究了潜在的临床、人口统计学和社会决定因素，但尚不清楚它们是如何相互作用的。
从意大利北部摩德纳的认知神经科诊所招募了92对连续的患者-照料者二元组。要求照料者填写关于他们的负担、心理困扰和家庭经济状况的问卷。数据用多变量回归模型进行分析，然后输入中介模型。
照料者负担与女性照料者性别、与患者的配偶关系、患者行为症状的严重程度、诊断延迟以及家庭经济困境呈正相关。它与疾病持续时间、患者教育程度、出生地、照料者年龄、照料者的休假天数、子女数量以及照料者对患者生活质量的感知呈负相关。虽然照料者年龄、诊断延迟以及家庭或社会网络代理变量的影响直接影响照料者负担，但患者疾病持续时间、作为妻子照料者、经济困境以及照料者休假天数的影响完全由照料者心理困扰水平介导。
应计划采取直接行动（如增加社会网络和缩短诊断延迟）和旨在减轻心理困扰的间接行动（如增加照料者的休假天数和经济支持）来减轻照料者负担。
