Background:

Quality of life (QoL) has seldom been investigated or explicitly measured in young-onset dementia (YoD). The aims of this study were (1) to investigate and compare QoL self- and proxy reports in a sample of YoD patients and caregivers using different conceptual assessments of QoL and (2) to examine the relationship between caregiver QoL and both burden and mental health.

Methods:

There were 52 participants (26 YoD patient–caregiver dyads). The design was cross-sectional and part of a larger longitudinal prospective cohort study of YoD patients and caregivers. Primary measures included generic QoL (World Health Organization Quality of Life–short version [WHOQOL-BREF]), dementia-specific QoL (Quality of Life in Alzheimer’s Disease Scale [QoL-AD]), health-related QoL (EQ5D), and a single-item QoL measure. Secondary measures included caregiver burden (Zarit Burden Index), mental health (Hospital Anxiety and Depression Scale), and dementia severity (Clinical Dementia Rating).

Results:

Patient QoL self-reports were higher than caregiver proxy reports on the QoL-AD (P = .001). Patient QoL self-reports for the WHOQOL-BREF (P < .01) and single-item QoL (P < .05) measure were significantly higher than caregiver self-reports. Dementia severity had no relationship with QoL self-reports. Caregiver burden, anxiety, and depression were negatively correlated with QoL when measured using a generic and single-item measure, but not with the health-related measure.

Discussion:

Patients and caregivers show a disparity in QoL reports, with patients tending to report higher QoL. Caregiver burden, anxiety, and depression should be areas targeted for interventions when supporting caregivers.

中文翻译：

---

年轻痴呆症患者及其照顾者的生活质量评估。

背景：

很少有研究或明确测量年轻发作性痴呆 (YoD) 的生活质量 (QoL)。本研究的目的是 (1) 使用不同的 QoL 概念评估调查和比较 YoD 患者和护理人员样本中的 QoL 自我报告和代理报告，以及 (2) 检查护理人员 QoL 与负担和心理健康之间的关系.

方法：

有 52 名参与者（26 名 YoD 患者 - 护理人员）。该设计是横断面设计，是一项针对 YoD 患者和护理人员的大型纵向前瞻性队列研究的一部分。主要衡量指标包括通用 QoL（世界卫生组织生活质量 - 短版 [WHOQOL-BREF]）、痴呆症特异性 QoL（阿尔茨海默病生活质量量表 [QoL-AD]）、健康相关 QoL (EQ5D)，以及单项 QoL 衡量标准。次要指标包括照顾者负担（Zarit 负担指数）、心理健康（医院焦虑和抑郁量表）和痴呆严重程度（临床痴呆评分）。

结果：

患者 QoL 自我报告高于 QoL-AD 的护理人员代理报告 ( P = .001)。WHOQOL-BREF ( P < .01) 和单项 QoL ( P < .05) 测量的患者 QoL 自我报告显着高于护理人员的自我报告。痴呆症严重程度与 QoL 自我报告无关。当使用通用和单项测量而不是健康相关测量时，看护者负担、焦虑和抑郁与 QoL 呈负相关。

讨论：

患者和护理人员在 QoL 报告中表现出差异，患者倾向于报告更高的 QoL。在支持照顾者时，照顾者的负担、焦虑和抑郁应该是干预的目标领域。