"I felt like I had been put on the shelf and forgotten about" - lasting lessons about the impact of COVID-19 on people affected by rarer dementias.
"I felt like I had been put on the shelf and forgotten about" - lasting lessons about the impact of COVID-19 on people affected by rarer dementias.
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DOI：
10.1186/s12877-023-03992-1
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发表时间：
2023-06-27
期刊：
影响因子：
4.1
通讯作者：
Suarez-Gonzalez, Aida
中科院分区：
文献类型：
--
作者：
Harding, Emma;Rossi-Harries, Sam;Gerritzen, Esther Vera;Zimmerman, Nikki;Hoare, Zoe;Proctor, Danielle;Brotherhood, Emilie;Crutch, Sebastian;Suarez-Gonzalez, Aida
关键词：
许多国家为遏制COVID-19的传播而采取的公共卫生措施导致向痴呆症患者提供支持和护理的工作大幅暂停。这些措施的负面影响已被广泛报道。然而，对于年轻发病、非记忆性痴呆和遗传性痴呆患者的具体影响，人们知之甚少。考虑到他们的非记忆表型和年龄，这组人可能与那些晚发性痴呆患者经历了不同的挑战。我们探讨了首次COVID-19封锁对英国家族性阿尔茨海默病、行为变异型额颞叶痴呆、家族性额颞叶痴呆、路易体痴呆、后皮层萎缩和原发性进行性失语患者及其护理人员的影响，以及他们自我报告的应对策略。这是一项混合方法研究。对痴呆症患者和通过罕见痴呆症支持组织招募的家庭护理人员进行了一项在线调查。使用框架分析来分析自由文本回复，以确定关键问题和主题。184名护理人员和24名痴呆症患者完成了这项调查。总体而言，在封锁期间，痴呆症患者的认知症状（70%）、做事能力（62%）、幸福感（57%）和药物变化（26%）都出现了恶化。护理人员报告说，他们得到的支持减少了（55%），这对他们自己的心理健康产生了负面影响。对自由文本回复的定性分析揭示了日常生活的中断、角色和责任的改变以及与朋友、家人、健康和社会护理支持的广泛脱节是如何根据表型而变化的。鉴于痴呆症的进行性，人们普遍认为宝贵的时间正在流失，这加剧了这些影响。尽管面临重大挑战，受访者在报告意外的积极因素和适应禁闭的策略方面表现出了韧性和足智多谋。这项研究强调了COVID-19限制对年轻发病、非记忆性痴呆和遗传性痴呆患者及其护理人员的具体影响，包括行为变异性额颞叶痴呆、原发性进行性失语症和后皮质萎缩。根据诊断和自我报告的策略所面临的具体挑战说明了更广泛地为这些代表性不足的群体提供量身定制的支持的重要性，并可能为发展提供信息。在线版本包含补充材料，可在10.1186/s12877-023-03992-1获得。
The public health measures imposed in many countries to contain the spread of COVID-19 resulted in significant suspensions in the provision of support and care for people with dementia. The negative effects of these measures have been extensively reported. However, little is known about the specific impact on people with young onset, non-memory-led and inherited dementias. This group may have experienced different challenges compared to those with late onset dementia given their non-memory phenotypes and younger age. We explored the impact of the first COVID-19 lockdown on people living with familial Alzheimer’s disease, behavioural variant frontotemporal dementia, familial frontotemporal dementia, dementia with Lewy bodies, posterior cortical atrophy and primary progressive aphasia and their carers in the UK and their self-reported strategies for coping. This was a mixed methods study. An online survey was administered to people with dementia and family carers recruited via Rare Dementia Support. Free-text responses were analysed using framework analysis to identify key issues and themes. 184 carers and 24 people with dementia completed the survey. Overall, people with dementia experienced worsening of cognitive symptoms (70%), ability to do things (62%), well-being (57%) and changes to medication (26%) during lockdown. Carers reported a reduction in the support they received (55%) which impacted their own mental health negatively. Qualitative analysis of free-text responses shed light on how the disruption to routines, changes to roles and responsibilities, and widespread disconnection from friends, family and health and social care support varied according to phenotype. These impacts were exacerbated by a more general sense that precious time was being lost, given the progressive nature of dementia. Despite significant challenges, respondents demonstrated resilience and resourcefulness in reporting unexpected positives and strategies for adapting to confinement. This study has highlighted the specific impacts of the COVID-19 restrictions on people with young onset, non-memory-led and inherited dementias, including behavioural variant frontotemporal dementia, primary progressive aphasia and posterior cortical atrophy, and their carers. The specific challenges faced according to diagnosis and the self-reported strategies speak to the importance of – and may inform the development of – tailored support for these underrepresented groups more generally. The online version contains supplementary material available at 10.1186/s12877-023-03992-1.
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DOI：
10.1016/j.jamda.2020.11.025
发表时间：
2021-03
影响因子：
7.6
作者：
Bethell, Jennifer;Aelick, Katelynn;Babineau, Jessica;Bretzlaff, Monica;Edwards, Cathleen;Gibson, Josie-Lee;Colborne, Debbie Hewitt;Iaboni, Andrea;Lender, Dee;Schon, Denise;McGilton, Katherine S.
通讯作者：
McGilton, Katherine S.
影响因子：
2.6
作者：
Hanna K;Giebel C;Tetlow H;Ward K;Shenton J;Cannon J;Komuravelli A;Gaughan A;Eley R;Rogers C;Rajagopal M;Limbert S;Callaghan S;Whittington R;Butchard S;Shaw L;Gabbay M
通讯作者：
Gabbay M
影响因子：
9.3
作者：
Harrison, Stephanie L.;Buckley, Benjamin J. R.;Lane, Deirdre A.;Underhill, Paula;Lip, Gregory Y. H.
通讯作者：
Lip, Gregory Y. H.
影响因子：
3.4
作者：
Giebel, Clarissa;Cannon, Jacqueline;Gabbay, Mark
通讯作者：
Gabbay, Mark
影响因子：
4
作者：
Giebel C;Lord K;Cooper C;Shenton J;Cannon J;Pulford D;Shaw L;Gaughan A;Tetlow H;Butchard S;Limbert S;Callaghan S;Whittington R;Rogers C;Komuravelli A;Rajagopal M;Eley R;Watkins C;Downs M;Reilly S;Ward K;Corcoran R;Bennett K;Gabbay M
通讯作者：
Gabbay M