Gannan Medical University, Ganzhou, Jiangxi, China.
Department of Psychology, The Third People's Hospital of Ganzhou, China.
Psychogeriatrics. 2020 Jul;20(4):398-405. doi: 10.1111/psyg.12528. Epub 2020 Feb 6.
Based on the ageing population and the inadequate healthcare system in China, the majority of care for patients with Alzheimer's disease (AD) is provided by family caregivers. Caregivers suffer a long-term heavy care burden and pressure, which affects their physical and mental health. The present study aims at investigating health-related quality of life (HRQOL) among family caregivers of AD patients and exploring its influencing factors.
This study included 206 family caregivers (76 male, 130 female) of AD patients recruited from one Tier 3 hospital, one psychiatric hospital, two gerocomiums and three communities in Ganzhou city, Jiangxi Province, China. Measures included the World Health Organization (WHO) Quality of Life (WHO/ QOL-BREF) questionnaire, Zarit burden of care scale (ZBI), and social support rating scale (SSRS).We performed face-to-face or telephone interviews with patients and caregivers. The association between possible factors and changes in HRQOL was examined through stepwise multiple regression analysis.
The majority of family caregivers felt moderate to severe level of burden. The average HRQOL score was 54.24 ± 10.36. The mean SSRS score was 30.4 ± 10.9. The average ZBI score was 41.2 ± 12.8. The HRQOL of family caregivers of AD patients was negatively correlated with the neuropsychiatric questionnaire score, ZBI score, and chronic diseases of caregivers (P < 0.05), and positively correlated with the SSRS score (P < 0.05).
Reduced QOL was highly prevalent among AD patient family caregivers, and the level of burden, neuropsychiatric symptoms of patients, social support, and chronic diseases of caregivers were factors associated with HRQOL, and the effect of care burden is greatest. Interventions aimed at reducing the level of burden should focus not only on the patient but also on the caregiver.
基于中国人口老龄化和医疗保健系统不完善的现状，大部分阿尔茨海默病（AD）患者的护理工作由家庭照顾者提供。照顾者长期承受沉重的护理负担和压力，这影响了他们的身心健康。本研究旨在调查 AD 患者家庭照顾者的健康相关生活质量（HRQOL），并探讨其影响因素。
本研究纳入了来自江西省赣州市一家三级医院、一家精神病院、两家养老院和三个社区的 206 名 AD 患者的家庭照顾者（男性 76 名，女性 130 名）。研究工具包括世界卫生组织生活质量量表简表（WHOQOL-BREF）、照顾者负担量表（ZBI）和社会支持评定量表（SSRS）。我们通过面对面或电话访谈的方式对患者及其照顾者进行了调查。通过逐步多元回归分析，考察了可能的因素与 HRQOL 变化之间的关联。
大多数家庭照顾者感到中度至重度负担。HRQOL 平均得分为 54.24±10.36。SSRS 平均得分为 30.4±10.9。ZBI 平均得分为 41.2±12.8。AD 患者家庭照顾者的 HRQOL 与神经精神问卷评分、ZBI 评分和照顾者的慢性病呈负相关（P<0.05），与 SSRS 评分呈正相关（P<0.05）。
AD 患者家庭照顾者的生活质量普遍较差，照顾者的负担水平、患者的神经精神症状、社会支持和慢性病是与 HRQOL 相关的因素，其中照顾者的负担影响最大。旨在降低负担水平的干预措施不仅应针对患者，还应针对照顾者。
