Department of Clinical Psychology, 4591University of Liverpool, UK.
Department of Public Health and Policy, 4591University of Liverpool, UK.
Dementia (London). 2021 Aug;20(6):1875-1890. doi: 10.1177/1471301220973067. Epub 2020 Dec 29.
Sensitivity to the rights of people with dementia is a key principle cited in the World Health Organisation's global action plan on dementia. Some critics question whether rights-based approaches embody loose and ill-defined ideas incapable of bringing about meaningful change. Exercising the right to autonomy is considered a core problem for people living with dementia. The tradition of individual sovereignty dominates ideas about autonomy, although the person as an individual is not a cross-culturally universal concept. This study explored the viewpoints of people with dementia and family carers regarding the meaning of autonomy with a view to informing rights-based practice.
Twenty participants, people living with dementia and family carers, each conducted a Q-sort of statements regarding the meaning of autonomy. A by-person factor analysis was used to identify patterns in how the range of statements about autonomy were ranked.
Three factors emerged: retaining independence and self-expression, accepting dependence but being included and opportunity for connection. There was some agreement across these different views regarding the importance of being given time to think before making decisions and being kept active.
This study highlights the need for a person-centred approach to supporting people with dementia to claim their rights and the importance of adopting a stance of curiosity and critical thinking in rights-based training and professional practice. The findings suggest a variety of meaningful stories of autonomy and the possibility of further developing existing rights-based frameworks for dementia care.
对痴呆症患者权利的敏感性是世界卫生组织全球痴呆症行动计划中引用的一项关键原则。一些批评者质疑基于权利的方法是否体现了无法带来有意义变革的松散和模糊的想法。行使自主权被认为是与痴呆症患者生活相关的核心问题。个人主权的传统主导着关于自主权的观念，尽管个人作为一个个体并不是一个跨文化的普遍概念。本研究探讨了痴呆症患者和家庭照顾者对自主权含义的观点，以期为基于权利的实践提供信息。
20 名参与者，包括痴呆症患者和家庭照顾者，每人对自主权含义的陈述进行了 Q 分类。采用个人因素分析法，确定了对自主权的各种陈述进行排名的模式。
出现了三个因素：保持独立性和自我表达、接受依赖但被包容和有机会建立联系。这些不同观点在给予思考时间做出决策和保持活跃的重要性方面存在一些共识。
本研究强调了需要采取以个人为中心的方法来支持痴呆症患者主张自己的权利，并需要在基于权利的培训和专业实践中采取好奇和批判性思维的立场。研究结果表明，存在各种有意义的自主权故事，并且有可能进一步发展现有的痴呆症护理权利框架。
