社会生态系统理论对建设我国以人为中心阿尔茨海默病照护者支持体系的启示

Implications From the Social Ecosystem Theory for the Patient- centered Supporting System for Caregivers of Alzheimer Disease in China

全世界有4 680万痴呆患者,其中2/3为阿尔茨海默病(AD),这些患者中近1/4生活在我国。在我国,绝大多数AD患者依靠家庭照护,对AD照护者形成巨大的照护压力。随着社会老龄化的加剧,我国必须构建一个理论支持下的符合我国实际、具有广泛适用性的以人为中心的AD照护者支持体系,这对于减轻社会和家庭负担、提高AD患者及AD照护者生活质量具有重要意义。本文通过对我国AD照护者支持现状和所存在的问题进行分析,对在社会生态系统理论指导下建立我国以人为中心的AD照护者支持体系进行探讨。提出在我国现有医疗体制下,可以社会生态系统理论为指导,建立以AD患者为中心、以社区为支持主体,涵盖政府组织、制度、经费、监督等的宏观系统,社区、医院、社会团体等的中观系统以及AD照护者的微观系统的AD照护者支持体系。

It is estimated that 4. 68 million people live with dementia worldwide,of which two third are Alzheimer disease（ AD）,and nearly a quarter of them are living in China. Most people living with AD rely on family members to care for them at home. Caregivers expect to experience a high level of care burden when AD progresses. The demand for establishing a caregiver support system with theoretical support has escalated in the context of rapidly ageing population in China. It has been discussed in the dementia care literature that the caregiver support system needs to be grounded on sound theories,reflects the socio- cultural context and has a wide applicability,and the system is of great significance in alleviating social and domestic burden and improves the quality of life of AD patients and caregivers. In this paper,we analyze the current status and challenges caregivers face in China and argue that incorporating a person- centered care concept into the social ecosystem theory is the most suitable theoretical framework for establishing and developing a support system for AD caregivers. We suggest that it is necessary to develop a three- level supporting system incorporating a macro supporting system that includes government＇ s policies,finance,organization and supervision,a sub- macro supporting- system that comprises community healthcare organizations,comprehensive hospitals and community organizations,and a micro supporting system that includes AD patients＇ families and caregivers,with its main support from community health service settings. These systems need to support each other and work in collaboration and coordination in order to sustain family- based care model for AD patients.