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意大利老年痴呆症患者家庭照顾者未满足的需求:我们目前了解到了什么,接下来该怎么做?

Unmet Needs for Family Caregivers of Elderly People With Dementia Living in Italy: What Do We Know So Far and What Should We Do Next?

作者信息

De Cola Maria C, Lo Buono Viviana, Mento Agata, Foti Mariella, Marino Silvia, Bramanti Placido, Manuli Alfredo, Calabrò Rocco S

机构信息

1 IRCCS Centro Neurolesi "Bonino-Pulejo," Messina, Italy.

出版信息

Inquiry. 2017 Jan 1;54:46958017713708. doi: 10.1177/0046958017713708.

Abstract

Care of the elderly with dementia represents one of the major challenges for the modern society worldwide. The burden of dementia care often falls on the family members, entailing heavy psychosocial and economic consequences. The aim of this study was to evaluate the caregiver's perspective concerning the support for disease management on behalf of the physicians and the local Sicilian administrations (Italy), and the burden of care and effects on their lifestyle, to propose new prevention strategies and service for managing dementia and caregiver's burden. Fifty-nine caregivers of Italian elderly people with dementia (mean age, 73; age range: 63-83) were interviewed, and 55 of them completed an ad hoc self-report questionnaire composed of 54 multiple-choice questions. Our findings suggest that caregivers need more information on the disease's management, as well as on how to deal with the stress due to the disease burden. Moreover, a negative perception about the services offered from the local administration emerged. Assistive technology (AT) could be useful in promoting interaction between general practitioners and specialized centers for diagnosis, pharmacological and psychosocial treatments, and in saving costs. Moreover, case manager could follow patients and support family members within the care pathway, besides collecting and sharing information among the different health professionals involved. Further studies should be aimed at investigating whether AT and/or the use of specific educational strategies could be the right approach for meeting the needs of families living with dementia.

摘要

照顾老年痴呆患者是全球现代社会面临的主要挑战之一。痴呆症护理的负担往往落在家庭成员身上,带来沉重的心理社会和经济后果。本研究的目的是评估照顾者对于代表医生和西西里岛地方政府(意大利)进行疾病管理支持的看法,以及护理负担及其对他们生活方式的影响,以提出管理痴呆症和照顾者负担的新预防策略和服务。对59名意大利老年痴呆患者的照顾者(平均年龄73岁;年龄范围:63 - 83岁)进行了访谈,其中55人完成了一份由54个多项选择题组成的专门自填式问卷。我们的研究结果表明,照顾者需要更多关于疾病管理以及如何应对疾病负担带来的压力的信息。此外,对地方政府提供的服务出现了负面看法。辅助技术(AT)有助于促进全科医生与诊断、药物和心理社会治疗专业中心之间的互动,并节省成本。此外,个案管理员除了在不同的医疗专业人员之间收集和共享信息外,还可以在护理过程中跟踪患者并支持家庭成员。进一步的研究应旨在调查辅助技术和/或使用特定教育策略是否是满足痴呆症患者家庭需求的正确方法。

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