Giebel Clarissa, Lion Katarzyna, Mackowiak Maria, Chattat Rabih, Kumar P N Suresh, Cations Monica, Gabbay Mark, Moyle Wendy, Ottoboni Giovanni, Rymaszewska Joanna, Senczyszyn Adrianna, Szczesniak Dorota, Tetlow Hilary, Trypka Elzbieta, Valente Marco, Chirico Ilaria
Department of Primary Care & Mental Health, University of Liverpool, Liverpool, UK.
NIHR ARC NWC, Liverpool, UK.
BMC Geriatr. 2022 Feb 11;22(1):116. doi: 10.1186/s12877-022-02821-1.
Emerging evidence shows an impact of the COVID-19 pandemic on people living with dementia and informal carers, without any evidence-based global comparison to date. The aim of this international study was to explore and compare the perceived impact of COVID-19 and associated public health restrictions on the lives of people living with dementia and informal carers and access to dementia care across five countries.
Informal carers and people living with dementia who were residing in the community in the UK, Australia, Italy, India, and Poland were interviewed remotely between April and December 2020. Participants were asked about their experiences of the pandemic and how restrictions have impacted on their lives and care. Transcripts were analysed by researchers in each country using inductive thematic analysis.
Fifteen people living with dementia and 111 informal carers participated across the five countries. Four themes emerged: (1) Limited access and support; (2) Technology and issues accessing remote support; (3) Emotional impact; and (4) Decline of cognitive and physical health reported by carers. Whilst variations were noted, the pandemic has indirectly affected people with dementia and carers across all five countries. The pandemic removed access to social support services and thus increased carer burden. Remote services were not always provided and were very limited in benefit and usability for those with dementia. As a result, carers appeared to notice reduced cognitive and physical health in people with dementia. Particular differences were noted between India and Poland vs. the UK, Italy, and Australia, with less impact on care provision in the former due to limited uptake of support services pre-pandemic based on cultural settings.
The pandemic has amplified dementia as a global public health problem, and people affected by the condition need support to better access vital support services to live well.
新出现的证据显示了新冠疫情对痴呆症患者及非正式照料者的影响,但迄今为止尚无基于证据的全球比较。这项国际研究的目的是探讨和比较新冠疫情及相关公共卫生限制措施对五个国家痴呆症患者及非正式照料者生活的感知影响,以及获得痴呆症护理服务的情况。
2020年4月至12月期间,对居住在英国、澳大利亚、意大利、印度和波兰社区的非正式照料者和痴呆症患者进行了远程访谈。参与者被问及他们的疫情经历以及限制措施如何影响他们的生活和护理。每个国家的研究人员使用归纳主题分析法对访谈记录进行了分析。
五个国家共有15名痴呆症患者和111名非正式照料者参与。出现了四个主题:(1)获得的服务和支持有限;(2)技术及获得远程支持的问题;(3)情感影响;(4)照料者报告的认知和身体健康下降。虽然存在差异,但疫情在所有五个国家都间接影响了痴呆症患者和照料者。疫情导致无法获得社会支持服务,从而增加了照料者的负担。远程服务并非总是提供,对痴呆症患者来说,其益处和可用性非常有限。结果,照料者似乎注意到痴呆症患者的认知和身体健康有所下降。印度和波兰与英国、意大利和澳大利亚之间存在特别差异,由于疫情前基于文化背景对支持服务的接受程度有限,前者受到的护理影响较小。
疫情使痴呆症成为一个全球公共卫生问题,受该疾病影响的人需要获得支持,以便更好地获得重要的支持服务从而过上良好生活。