Care Policy and Evaluation Centre, London School of Economics and Political Science, London, UK.
Brighton and Sussex Medical School, University of Sussex, Brighton, UK.
Int J Geriatr Psychiatry. 2022 Oct;37(10). doi: 10.1002/gps.5803.
Research into people with dementia's experiences of the Covid-19 pandemic has tended to focus on vulnerabilities and negative outcomes, with the risk of reproducing a discourse in which people with dementia are positioned as passive. Informed by concepts positioning people with dementia as 'active social agents', we aimed to identify the pandemic-related challenges faced by people recently diagnosed with dementia and examine the ways in which they actively coped with, and adapted to, these challenges.
In-depth interviews with 21 people recently diagnosed with dementia, recruited through an existing national cohort. Data was analysed thematically using Framework.
Key challenges included reduced social contact, loneliness and loss of social routines; difficulties accessing and trusting health services; dementia-unfriendly practices; and disparate experiences of being able to 'get out' into the physical neighbourhood. People with dementia responded to challenges by maintaining and extending their social networks and making the most of 'nodding acquaintances'; learning new skills, for communication and hobbies; supporting others, engaging in reciprocal exchange and valuing connection with peers; seeking help and advocacy and challenging and resisting dementia-unfriendly practices; maintaining and adapting habitual spatial practices and being determined to 'get out'; and employing similar emotional coping strategies for the pandemic and dementia.
Support for people with dementia, especially during public health crises when carers and services are under pressure, should involve utilising existing capacities, appropriately supporting the acquisition of new knowledge and skills, 'safety-netting' through the availability of a named professional, advocacy and support and use of 'check-in calls' and creating supportive social and environmental circumstances for people with dementia to sustain their own well-being.
研究痴呆症患者对新冠疫情的体验，往往侧重于脆弱性和负面结果，有复制一种将痴呆症患者视为被动的话语的风险。受将痴呆症患者定位为“积极的社会代理人”的概念的启发，我们旨在确定最近被诊断为痴呆症的患者面临的与疫情相关的挑战，并研究他们积极应对和适应这些挑战的方式。
通过一个现有的国家队列，对 21 名最近被诊断为痴呆症的患者进行深入访谈。使用框架方法对数据进行主题分析。
主要挑战包括社交接触减少、孤独和社交常规丧失；难以获得和信任卫生服务；不友好的痴呆症护理做法；以及能够“走出”物理社区的经历存在差异。痴呆症患者通过维持和扩展社交网络并充分利用“点头之交”来应对挑战；学习沟通和爱好的新技能；支持他人，进行互惠交流并重视与同龄人建立联系；寻求帮助和倡导，挑战和抵制不友好的痴呆症护理做法；维持和调整习惯性的空间实践，并决心“走出家门”；并为疫情和痴呆症采用类似的情绪应对策略。
在公共卫生危机期间，尤其是在照顾者和服务压力大的情况下，为痴呆症患者提供支持，应包括利用现有能力、适当支持新知识和技能的获取、通过指定专业人员的可用性提供“安全网”、倡导和支持以及使用“签到电话”，并为痴呆症患者创造支持性的社会和环境环境，以维持他们的幸福感。
