Introduction Few studies have longitudinally mapped quality of life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during coronavirus disease-2019 (COVID-19). Methods In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019–March 2020), followed up after the first lockdown (July–October 2020) and then again a year and 2 years later. Latent growth curve modelling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL). Results Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. ‘Confidence in future’ and ‘Feeling supported’ were the only carer QoL subscales to show some recovery post-pandemic. Discussion It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL.

中文翻译：

---

COVID-19 大流行对痴呆症患者及其家庭护理人员的生活质量的长期影响

简介 很少有研究纵向绘制新诊断痴呆症患者及其护理人员的生活质量 (QoL) 轨迹，特别是在 2019 年冠状病毒病 (COVID-19) 期间。方法 在英国的一项队列研究中，在大流行之前（2019 年 7 月至 2020 年 3 月）对 261 名新诊断的痴呆症患者和 206 名家庭护理人员进行了评估，在第一次封锁后（2020 年 7 月至 10 月）进行了随访，然后又一年又两年进行了随访。多年后。潜在生长曲线模型使用痴呆症特定的生活质量测量（DEMQOL 和 C-DEMQOL）检查了四个时间点的生活质量水平和变化。结果 尽管个体变化分数存在差异，但我们的结果表明，痴呆症患者在大流行期间总体上保持了生活质量，并在该时期结束时出现了一些增加。这与同期护理人员的生活质量普遍恶化形成鲜明对比。“对未来的信心”和“感觉受到支持”是唯一显示出大流行后有所恢复的护理人员生活质量分量表。讨论 积极的是，即使在全球混乱时期，痴呆症发病后生活质量的下降也并非不可避免。然而，令人担忧的是，即使在取消 COVID-19 限制后，护理人员的生活质量也在同一时期下降。护理人员在痴呆症患者和更广泛的社会的生活中发挥着不可估量的作用，我们的研究结果表明，在大流行后，他们可能需要更多的支持来维持他们的生活质量。