Division of Psychiatry, University College London, London, UK
Division of Psychiatry, University College London, London, UK.
BMJ Open. 2020 Oct 8;10(10):e041873. doi: 10.1136/bmjopen-2020-041873.
To explore how the self-management of comorbid long-term conditions is experienced and negotiated by people with dementia and their carers.
Secondary thematic analysis of 82 semi-structured interviews.
Community settings across the United Kingdom.
11 people with dementia, 22 family carers, 19 health professionals and 30 homecare staff.
We identified three overarching themes: (1) : stakeholders balanced the wishes of people with dementia to retain autonomy with the risks of lower adherence to medical treatments. The task of helping a person with dementia to take medication was perceived as intermediate between a personal care and a medical activity; rules about which professionals could perform this activity sometimes caused conflict. (2) family carers often communicated with services and made decisions about how to implement medical advice. In situations where family carers or homecare workers were not substituting self-management, it could be challenging for general practitioners to identify changes in self-management and decide when to intervene. (3) : healthcare professionals acknowledged the inter-relatedness of physical health and cognition to adapt care accordingly. Some treatments prescribed for long-term conditions were perceived as unhelpful when not adapted to the context of dementia. Healthcare professionals and homecare workers sometimes felt that family carers were unable to accept that available treatments may not be helpful to people with dementia and that this sometimes led to the continuation of treatments of questionable benefit.
The process of substituting self-management evolves with advancement of dementia symptoms and relies on communication in the care network, while considering the impact on and from dementia to achieve holistic physical health management. Care decisions must consider people with dementia as a whole, and be based on realistic outcomes and best interests.
探索痴呆症患者及其照顾者如何自我管理共病的长期疾病。
对 82 次半结构化访谈进行二次主题分析。
英国各地的社区环境。
11 名痴呆症患者、22 名家庭照顾者、19 名卫生专业人员和 30 名家庭护理人员。
我们确定了三个总体主题：（1）利益相关者在平衡痴呆症患者保持自主权的愿望与降低对医疗治疗的依从性的风险之间取得平衡。帮助痴呆症患者服药的任务被认为介于个人护理和医疗活动之间；关于哪些专业人员可以执行此活动的规则有时会引起冲突。（2）家庭照顾者经常与服务部门沟通，并就如何实施医疗建议做出决策。在家庭照顾者或家庭护理人员没有替代自我管理的情况下，全科医生很难确定自我管理的变化，并决定何时进行干预。（3）医疗保健专业人员承认身体健康和认知之间的相互关系，以便相应地调整护理。一些为长期疾病开的治疗方法被认为在不适应痴呆症背景的情况下没有帮助。医疗保健专业人员和家庭护理人员有时觉得家庭照顾者无法接受可用的治疗方法可能对痴呆症患者没有帮助，这有时会导致继续使用疗效存疑的治疗方法。
替代自我管理的过程随着痴呆症症状的发展而演变，依赖于护理网络中的沟通，同时考虑到对痴呆症的影响和来自痴呆症的影响，以实现整体身体健康管理。护理决策必须考虑到痴呆症患者的整体情况，并基于现实的结果和最佳利益。
