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马来西亚非正式照料者中阿尔茨海默病的照料者负担:一项横断面研究

Caregiver burden of Alzheimer's disease among informal caregivers: a cross-sectional study in Malaysia.

作者信息

Tay Lyn Xuan, Ong Siew Chin, Ong Hui Ming, Teh Ewe Eow, Ch'ng Alan Swee Hock, Tiong Ing Khieng, Razali Rizah Mazzuin, Parumasivam Thaigarajan

机构信息

Discipline of Social and Administrative Pharmacy, Universiti Sains Malaysia, 11800, Pulau Pinang, Malaysia.

Department of Psychiatry & Mental Health, Hospital Pulau Pinang, Ministry of Health Malaysia, 10990, Pulau Pinang, Malaysia.

出版信息

Sci Rep. 2025 Mar 24;15(1):10067. doi: 10.1038/s41598-025-95210-8.

Abstract

Alzheimer's disease (AD) not only impacts the patients but substantially informal caregivers in terms of physical and psychological burden. This study aims to determine the burden level of informal caregivers of patients with different stages of AD and use of special accommodation (SpA) along with its predictors. A cross-sectional study was conducted by interviewing AD patients and informal caregivers recruited from 4 tertiary hospitals. Zarit Burden Interview (ZBI) was used to estimate caregivers' burden. The analysis categorized informal caregivers of AD patients into two groups based on the use of SpA. Multivariable linear regression was employed to identify potential determinants of subjective caregiver burden. As a result, caregivers' burden experienced by informal caregivers of severe community-dwelling AD patients was significantly higher (p = 0.024) than those with special accommodation. As AD advanced, caregivers' burden was elevated significantly (p = 0.021) from mild to severe AD among community-dwelling patients. In multivariable analysis, severe AD (standardised β = 0.187, p = 0.047 vs. mild AD) and spousal relationship (standardised β = 0.241, p = 0.026 vs. other relationships) were found to be significant factors in predicting caregivers' burden. Hence, the physical and social needs of informal caregivers must not be overlooked. Severe AD significantly increased caregiver burden in community dwelling patients. Spousal caregivers report a higher perceived burden compared to caregivers with other relationships. Policymakers need to recognize and address the substantial demands placed on informal caregivers by providing essential social support. Special accommodation could alleviate the burden on informal caregivers, particularly those caring for patients with severe AD.

摘要

阿尔茨海默病(AD)不仅会影响患者,还会给非正式照料者带来巨大的身心负担。本研究旨在确定不同阶段AD患者的非正式照料者的负担水平以及特殊住所(SpA)的使用情况及其预测因素。通过对从4家三级医院招募的AD患者和非正式照料者进行访谈,开展了一项横断面研究。采用 Zarit 负担访谈量表(ZBI)来评估照料者的负担。该分析根据SpA的使用情况将AD患者的非正式照料者分为两组。采用多变量线性回归来确定主观照料者负担的潜在决定因素。结果显示,居住在社区的重度AD患者的非正式照料者所承受的负担显著高于(p = 0.024)使用特殊住所的照料者。随着AD病情进展,居住在社区的患者中,照料者的负担从轻度AD到重度AD显著升高(p = 0.021)。在多变量分析中,重度AD(标准化β = 0.187,与轻度AD相比,p = 0.047)和配偶关系(标准化β = 0.241,与其他关系相比,p = 0.026)被发现是预测照料者负担的重要因素。因此,非正式照料者的身体和社会需求不容忽视。重度AD显著增加了居住在社区患者的照料者负担。与其他关系的照料者相比,配偶照料者报告的负担感更高。政策制定者需要认识到并应对非正式照料者面临的巨大需求,提供必要的社会支持。特殊住所可以减轻非正式照料者的负担,尤其是那些照料重度AD患者的人。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/30d0/11933415/5d56b3af9155/41598_2025_95210_Fig1_HTML.jpg

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