Aguglia E, Onor M L, Trevisiol M, Negro C, Saina M, Maso E
Department of Clinical, Morphological and Technological Sciences, U.C.O. of Clinical Psychiatry, Alzheimer Evaluation Unit, University of Trieste, Trieste, Italy.
Am J Alzheimers Dis Other Demen. 2004 Jul-Aug;19(4):248-52. doi: 10.1177/153331750401900403.
In Italy, the family constitutes the major caregiving response to the needs of the elderly who are no longer self-sufficient. These caregivers are often wives or daughters who have chosen to keep the patient at home with them. On average, three-quarters of the caregiver's day is devoted to the patient, a proportion that tends to increase linearly as the disease progresses. The primary aim of our study was to describe a group of Italian caregivers of patients with a diagnosis of dementia to assess their levels of stress. We then correlated these caregivers with a number of sociodemographic variables and the patients' degree of cognitive impairment and independence in daily life activities. The study was conducted on a sample group of 236 caregivers of patients with a diagnosis of Alzheimer's disease (AD) according to the DSM-IV criteria. Each caregiver took part in a sociodemographic interview and filled in two questionnaires: the Caregiver Burden Inventory (CBI), to quantify the caregiving workload and the Brief Symptom Inventory (BSI), to assess the level of anxiety and depression. Patients were administered the Mini-Mental State Examination (MMSE) to evaluate their level of cognitive impairment and the Instrumental Activities of Daily Living (IADL) and Activities of Daily Living (ADL) tests to quantify their level of independence. The analysis of the results shows that the average Italian caregiver of an AD patient is a woman, approximately 60 years old. The majority of caregivers are spouses, followed by children. In general, these caregivers work at home, are housewives or retired, and are personally involved in caring for the patients. The greater the level of a patient's cognitive impairment and the less independent they are, the greater amount of care and supervision they require, leaving less free time for the caregiver; this leads to higher levels of anxiety related to caregiving. Toward the final stages of the disease, patient care tasks take up nearly all of the caregiver's free time, leaving them only about two hours per week for themselves or their friends. In conclusion, the management of dementia patients places a particular burden on the caregiver and involves several economic and social costs. The burden becomes heavier as the disease progresses, since the increase of cognitive disorders and the resulting reduction of independence in daily life, together with the onset of behavioral symptoms, heighten the caregiver's distress, anxiety, and depression. Establishing a network of community services able to alleviate the burden on families is therefore a priority. Parallels can be drawn between the stresses documented for American caregivers and their Italian counterparts.
在意大利,家庭是满足那些无法自理的老年人需求的主要照料力量。这些照料者通常是妻子或女儿,她们选择让患者与自己同住。平均而言,照料者一天中四分之三的时间都用于照顾患者,而且随着疾病的进展,这一比例往往呈线性增加。我们研究的主要目的是描述一组被诊断患有痴呆症患者的意大利照料者,以评估他们的压力水平。然后,我们将这些照料者与一些社会人口学变量以及患者的认知障碍程度和日常生活活动独立性进行关联分析。该研究以236名根据《精神疾病诊断与统计手册》第四版(DSM-IV)标准被诊断患有阿尔茨海默病(AD)患者的照料者为样本组展开。每位照料者都参与了一次社会人口学访谈,并填写了两份问卷:照料者负担量表(CBI),用于量化照料工作负担;症状自评量表(BSI),用于评估焦虑和抑郁水平。对患者进行简易精神状态检查表(MMSE)测试以评估其认知障碍程度,并进行日常生活能力量表(IADL)和日常生活活动量表(ADL)测试以量化其独立程度。结果分析表明,意大利AD患者的照料者平均为60岁左右的女性。大多数照料者是配偶,其次是子女。总体而言,这些照料者在家工作,是家庭主妇或退休人员,并且亲自参与患者的照料。患者的认知障碍程度越高,独立性越低,他们所需的照料和监督就越多,留给照料者的空闲时间就越少;这会导致与照料相关的焦虑水平升高。在疾病的最后阶段,患者照料任务几乎占据了照料者所有的空闲时间,每周留给他们自己或朋友的时间只有大约两小时。总之,痴呆症患者的管理给照料者带来了特殊负担,涉及多项经济和社会成本。随着疾病的进展,负担会加重,因为认知障碍的增加以及由此导致的日常生活独立性降低,再加上行为症状的出现,加剧了照料者的痛苦、焦虑和抑郁。因此,建立一个能够减轻家庭负担的社区服务网络是当务之急。美国照料者和意大利照料者所面临的压力存在相似之处。