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“我想做点什么”- 探索使社区居住的痴呆症患者的活动有意义的因素:一项聚焦的人种学研究。

"I Want to Do Something" - Exploring What Makes Activities Meaningful for Community-Dwelling People Living With Dementia: A Focused Ethnographic Study.

机构信息

Dementia Research Centre, Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology, UCL, London, UK.

School of Social Work, Faculty of Education and Professional Studies, Nipissing University, Nipissing, ON, Canada.

出版信息

Qual Health Res. 2024 Nov;34(13):1286-1302. doi: 10.1177/10497323241239487. Epub 2024 Apr 22.

DOI:10.1177/10497323241239487
PMID:38648467
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11555901/
Abstract

Supporting ageing in place, quality of life, and activity engagement are public health priorities for people with dementia. The importance of maintaining opportunities for meaningful activities has been widely acknowledged for those with dementia in long-term care, but little is known about what makes activities meaningful for, and how they are experienced by, people with different types of dementia in their own homes. This study used focussed ethnographic methods to explore the motivations and meanings of everyday activity engagement within the homes of 10 people with memory-led Alzheimer's disease and 10 people with posterior cortical atrophy. While participants' interactions with their everyday environments were challenged by their diagnoses, they were all finding ways to continue meaning-making via various activities. The main findings are encapsulated in three themes: (1) The fun and the function of activities; (2) Reciprocities of care, and (3) The constitution and continuity of (a changing) self. Ongoing engagement with both fun and functional activities offered participants living with different dementias opportunities to connect with others, to offer care and support (as well as receive it), and to maintain a sense of self and identity. Implications are discussed regarding the development and delivery of tailored interventions and support to enable continued engagement in meaningful activities for people with different types of dementia living in the community.

摘要

支持居家养老、提高生活质量和促进活动参与是痴呆症患者的公共卫生重点。对于长期护理中的痴呆症患者来说,保持有意义活动的机会非常重要,但对于在自己家中的不同类型痴呆症患者来说,什么使活动有意义以及他们如何体验这些活动,人们知之甚少。本研究采用集中的民族志方法,探索了 10 名记忆型阿尔茨海默病患者和 10 名后皮质萎缩患者在家庭中参与日常活动的动机和意义。尽管参与者与日常环境的互动受到其诊断的影响,但他们都在通过各种活动寻找继续进行意义建构的方法。主要发现包括三个主题:(1)活动的乐趣和功能;(2)关怀的互惠性;(3)(不断变化的)自我的构成和连续性。持续参与有趣和实用的活动为患有不同类型痴呆症的参与者提供了与他人联系、提供照顾和支持(以及接受照顾和支持)以及保持自我意识和身份的机会。本文就为居住在社区中的不同类型痴呆症患者提供量身定制的干预措施和支持,以促进他们持续参与有意义的活动,讨论了这些发现的意义。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0c5b/11555901/e18e8c1214ff/10.1177_10497323241239487-fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0c5b/11555901/e18e8c1214ff/10.1177_10497323241239487-fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/0c5b/11555901/e18e8c1214ff/10.1177_10497323241239487-fig1.jpg

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Diagnosis and Management of Posterior Cortical Atrophy.后皮质萎缩的诊断与管理
Curr Treat Options Neurol. 2023;25(2):23-43. doi: 10.1007/s11940-022-00745-0. Epub 2023 Feb 8.
3
Disease-modifying treatments in Alzheimer's disease.阿尔茨海默病的疾病修饰治疗
J Neurol. 2023 Apr;270(4):2342-2344. doi: 10.1007/s00415-023-11602-8. Epub 2023 Feb 16.
4
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Digital Storytelling with Persons Living with Dementia: Elements of Facilitation, Communication, Building Relationships, and Using Technology.与痴呆症患者一起进行数字故事讲述:促进、沟通、建立关系和使用技术的要素。
J Appl Gerontol. 2023 May;42(5):852-861. doi: 10.1177/07334648221142015. Epub 2022 Nov 30.
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