Rees Jessica, Tuijt Remco, Burton Alexandra, Walters Kate, Cooper Claudia
Division of Psychiatry, University College London, London, UK.
Division of Psychiatry, University College London, London, UK.
Int J Nurs Stud. 2021 Apr;116:103432. doi: 10.1016/j.ijnurstu.2019.103432. Epub 2019 Sep 25.
Long-term conditions are common in people living with dementia; their self-management is an important determinant of wellbeing. Family carers often support or substitute self-care activities, and act as proxies for self-management, as dementia progresses.
To conduct the first systematic review of how management of long-term conditions in people with dementia is best enabled and supported, including factors that facilitate or inhibit self-management and management by a proxy.
Systematic review.
We systematically searched MEDLINE, PsychINFO, Embase and Allied and Complementary Medicine databases up to November 2018.
We identified the long-term conditions most prevalent in people with dementia that require an element of self-management. We then developed our inclusion criteria to identify qualitative and quantitative studies describing the self-management (or self-management assisted by family carers) of long-term conditions in people with dementia. Two authors independently rated study validity using a standardised checklist. We synthesised qualitative and quantitative findings using a data driven convergent synthesis approach.
We included 12 articles meeting predetermined inclusion criteria: seven qualitative, two case studies, two quantitative and one mixed methods study. We identified four main themes across these studies: (1) dementia symptoms impeding treatment regimens (forgetfulness, decreased understanding, ability to communicate symptoms and behavioural and psychological symptoms); (2) adapting routines to be simpler, (using memory aids and accommodating physical limitations); (3) negotiating self-management support (carer availability and knowledge; balancing needs for safety and empowerment); and (4) interface with professionals, (Routine simplification, condition specific education, and acknowledging carer role).
People living with dementia can be supported to manage their own health for as long as possible, through simplifying routines and reminding, but where this can no longer be negotiated, carers take over responsibility for self-management, often due to safety concerns. Empowerment of people with dementia to remain involved in their care reduces the loss experienced by this transition. Communication and partnership between clinicians and carers is critical when supporting people living with a long-term condition and dementia. Care planning for people living with dementia and a long-term condition should include explicit discussion of how these partnerships will work and guidance on strategies carers can use to support people to self-manage long-term conditions.
长期病症在痴呆症患者中很常见；自我管理是其幸福感的重要决定因素。随着痴呆症病情进展，家庭护理人员常支持或替代自我护理活动，并充当自我管理的代理人。
对如何最好地促进和支持痴呆症患者长期病症的管理进行首次系统评价，包括促进或抑制自我管理及代理人管理的因素。
系统评价。
我们系统检索了截至2018年11月的MEDLINE、PsychINFO、Embase以及补充和替代医学数据库。
我们确定了痴呆症患者中最普遍的需要自我管理的长期病症。然后制定纳入标准，以识别描述痴呆症患者长期病症自我管理（或由家庭护理人员协助的自我管理）的定性和定量研究。两名作者使用标准化清单独立评估研究的有效性。我们采用数据驱动的收敛性综合方法综合定性和定量研究结果。
我们纳入了12篇符合预定纳入标准的文章：7篇定性研究、2篇案例研究、2篇定量研究和1篇混合方法研究。我们在这些研究中确定了四个主要主题：（1）痴呆症症状妨碍治疗方案（健忘、理解能力下降、表达症状的能力以及行为和心理症状）；（2）使日常活动更简单（使用记忆辅助工具并适应身体限制）；（3）协商自我管理支持（护理人员的可及性和知识；平衡安全和赋权需求）；以及（4）与专业人员的互动（简化日常活动、针对特定病症的教育以及认可护理人员的作用）。
通过简化日常活动和提醒，可以支持痴呆症患者尽可能长时间地管理自己的健康，但在无法再协商的情况下，护理人员通常出于安全考虑会接管自我管理的责任。让痴呆症患者有能力继续参与自身护理可减少这种转变带来的损失。在支持患有长期病症和痴呆症的患者时，临床医生与护理人员之间的沟通与合作至关重要。针对患有痴呆症和长期病症的患者的护理计划应明确讨论这些合作关系将如何开展，以及为护理人员提供有关可用于支持患者自我管理长期病症的策略的指导。
