Effects of social restrictions on people with dementia and carers during the pre-vaccine phase of the COVID-19 pandemic: Experiences of IDEAL cohort participants
Effects of social restrictions on people with dementia and carers during the pre-vaccine phase of the COVID-19 pandemic: Experiences of IDEAL cohort participants
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DOI：
10.1111/hsc.13863
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发表时间：
2022-06-13
影响因子：
2.4
通讯作者：
Clare, Linda
中科院分区：
文献类型：
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作者：
Pentecost, Claire;Collins, Rachel;Clare, Linda
这项定性研究旨在了解在COVID-19疫苗接种推出之前的社会限制时期，社交距离措施对英格兰和威尔士社区的痴呆症患者和护理人员的影响。我们对50-88岁独居或与伴侣一起生活的痴呆症患者和10名61-78岁的护理人员进行了12次半结构化访谈，他们都与痴呆症患者一起生活。其中三个采访对象是二人组。参与者是在2020年11月和12月招募的。我们使用框架分析来确定主题，并为潜在的解决方案提出建议。我们确定了三个相互关联的主题。痴呆症患者对能力或情绪下降感到恐惧，并试图减轻这种恐惧。护理人员注意到痴呆症患者的变化，增加了照顾的责任，对一些人来说，关系发生了变化。随后，在新的敌对环境中导航能力的信心降低，造成了重新参与的周期性困境，无法进行常规活动使情况变得更糟。在大流行期间，痴呆症患者和护理人员在斗争中经历了忽视和孤独，同时感到被社会排斥，人们对即将实施的疫苗规划几乎没有乐观情绪。人们找到了自己的解决方案，通过保持忙碌和社交活动，以及练习被认为有助于减少痴呆症进展的技能来减少孤立的影响。这一点和一些有限的当地公众倡议促进了社会包容的感觉。这项研究增加了对大流行几个月后长期社会隔离经历的现有证据的理解。它强调了卫生和社区团体的重要性，并提出了服务部门如何在社会限制期间和之后找到支持、包容痴呆症患者和护理人员并与之互动的方法。
This qualitative study was designed to understand the impact of social distancing measures on people with dementia and carers living in the community in England and Wales during a period of social restrictions before the COVID-19 vaccination roll-out. We conducted 12 semi-structured interviews with people with dementia aged 50-88 years, living alone or with a partner, and 10 carers aged 61-78 years, all living with the person with dementia. Three of the interviews were with dyads. Participants were recruited during November and December 2020. We used framework analysis to identify themes and elicit suggestions for potential solutions. We identified three interrelated themes. People with dementia experienced a fear of decline in capabilities or mood and attempted to mitigate this. Carers noticed changes in the person with dementia and increased caring responsibilities, and for some, a change in the relationship. Subsequently, reduced confidence in capabilities to navigate a new and hostile environment created a cyclical dilemma of re-engaging where an inability to access usual activities made things worse. People with dementia and carers experienced neglect and being alone in their struggle, alongside feeling socially excluded during the pandemic, and there was little optimism associated with the upcoming vaccine programme. People found their own solutions to reduce the effects of isolation by keeping busy and being socially active, and practising skills deemed to help reduce the progression of dementia. This and some limited local public initiatives for the general public facilitated feelings of social inclusion. This study adds understanding to existing evidence about the longer-term experience of social isolation several months into the pandemic. It highlights the importance of health and community groups and suggests how services can find ways to support, include, and interact with people with dementia and carers during and after social restrictions.