封控和社交限制下的生活——英格兰 COVID-19 大流行期间痴呆症患者及其照护者的经历。
Life under lockdown and social restrictions - the experiences of people living with dementia and their carers during the COVID-19 pandemic in England.
机构信息
Research Department of Primary Care and Population Health, University College London, Royal Free Campus, Rowland Hill Street, London, NW3 2PF, UK.
Newcastle University, Newcastle upon Tyne, UK.
出版信息
BMC Geriatr. 2021 May 10;21(1):301. doi: 10.1186/s12877-021-02257-z.
BACKGROUND
The impact of COVID-19 restrictions on people living with dementia and their carers is an emerging focus of recent research determining how we can best support this population. People living with dementia have faced service curtailment, increased risk for COVID-19, as well as potential heightened deterioration. This study reports the experiences of people living with dementia and their family carers during the early months of the COVID-19 pandemic in England and the impact on them.
METHODS
We recruited and remotely interviewed 30 people living with dementia in their own homes and 31 family carers, via video or telephone call in mid-2020. Data were transcribed and analysed using thematic analysis.
RESULTS
People living with dementia often had a basic understanding of COVID-19 restrictions but could have difficulty translating this into personalised risk-appraisal of their own actions. Managing COVID-19 risks facing people living with dementia at home was largely done by family carers, exemplified by changes to living arrangements, which could strain or sustain caring relationships. Well-established familial caring relationships contributed to the wellbeing of the person living with dementia and their carer, as well as keeping to simple routines that included leaving the home for exercise and stimulation. People living with dementia reported some negative psychological and cognitive effects due to the imposed restrictions, such as increased apathy, irritability, or anxiety, which were fuelled by lack of social engagement.
CONCLUSIONS
Structuring routine (remote) social interactions where possible could increase social engagement and improve wellbeing for people living with dementia, especially those with limited familial support in a post-COVID-19 context. As some care relationships had been restructured to manage COVID-19 risks, additional carer strain may emerge as a result of the impact on the independence of the person living with dementia and come to the attention of professionals in health and care services. People living with dementia and their carers highlighted the importance of maintaining or adapting routines which may be useful learning for professionals, although additional support may be necessary for those who are impacted by more severe or worsening symptoms of dementia.
背景
新冠疫情限制措施对痴呆症患者及其照护者的影响是最近研究的一个新兴焦点，这些研究旨在确定如何最好地支持这一人群。痴呆症患者面临服务削减、感染新冠病毒的风险增加，以及潜在的病情恶化。本研究报告了英格兰新冠疫情早期痴呆症患者及其家庭照护者的经历，以及这些经历对他们的影响。
方法
我们于 2020 年中期通过视频或电话采访的方式，在患者家中招募并远程采访了 30 名痴呆症患者和 31 名家庭照护者。数据经过转录和主题分析进行分析。
结果
痴呆症患者通常对新冠疫情限制措施有基本的了解，但可能难以将其转化为对自己行为的个性化风险评估。家庭照护者主要负责管理痴呆症患者在家中面临的新冠疫情风险，例如改变生活安排，这可能会给照护关系带来压力或维持其稳定。良好的家庭照护关系有助于痴呆症患者及其照护者的幸福，同时保持简单的日常生活，包括出门锻炼和接受刺激。痴呆症患者报告说，由于实施的限制，他们出现了一些负面的心理和认知影响，例如增加冷漠、易怒或焦虑，这些影响是由于缺乏社交互动引起的。
结论
在可能的情况下构建常规（远程）社交互动可以增加痴呆症患者的社交参与度和幸福感，特别是在新冠疫情后，那些有限的家庭支持的患者。由于一些照护关系已经进行了重组以管理新冠疫情风险，因此，由于对痴呆症患者独立性的影响，可能会出现额外的照护者压力，并引起卫生和保健服务专业人员的关注。痴呆症患者及其照护者强调了维持或调整日常生活的重要性，这可能对专业人员有帮助，但对于那些受到更严重或恶化的痴呆症症状影响的人，可能需要额外的支持。
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