Centre for Gerontology and Rehabilitation, School of Medicine, University College Cork, The Bungalow, Block 13, St Finbarr's Hospital, Douglas road, Cork, T21XH60, Republic of Ireland.
Research & Evaluation Dementia UK, London, UK.
BMC Palliat Care. 2017 Jul 14;17(1):9. doi: 10.1186/s12904-017-0221-0.
Dementia is the most common neurological disorder worldwide and is a life-limiting condition, but very often is not recognised as such. People with dementia, and their carers, have been shown to have palliative care needs equal in extent to those of cancer patients. However, many people with advanced dementia are not routinely being assessed to determine their palliative care needs, and it is not clear why this is so.
An interdisciplinary workshop on "Palliative Care in Neurodegeneration, with a focus on Dementia", was held in Cork, Ireland, in May 2016. The key aim of this workshop was to discuss the evidence base for palliative care for people with dementia, to identify 'gaps' for clinical research, and to make recommendations for interdisciplinary research practice. To lead the discussion throughout the day a multidisciplinary panel of expert speakers were brought together, including both researchers and clinicians from across Ireland and the UK. Targeted invitations were sent to attendees ensuring all key stakeholders were present to contribute to discussions. In total, 49 experts representing 17 different academic and practice settings, attended. Key topics for discussion were pre-selected based on previously identified research priorities (e.g. James Lind Alliance) and stakeholder input. Key discussion topics included: i. Advance Care Planning for people with Dementia; ii. Personhood in End-of-life Dementia care; iii. Topics in the care of advanced dementia at home. These topics were used as a starting point, and the ethos of the workshop was that the attendees could stimulate discussion and debate in any relevant area, not just the key topics, summarised under iv. Other priorities.
The care experienced by people with dementia and their families has the potential to be improved; palliative care frameworks may have much to offer in this endeavour. However, a solid evidence base is required to translate palliative care into practice in the context of dementia. This paper presents suggested research priorities as a starting point to build this evidence base. An interdisciplinary approach to research and priority setting is essential to develop actionable knowledge in this area.
痴呆症是全球最常见的神经退行性疾病，是一种限制生命的疾病，但往往未被识别为绝症。研究表明，痴呆症患者及其护理人员的姑息治疗需求与癌症患者相当。然而，许多处于晚期痴呆症的患者并未进行常规评估以确定其姑息治疗需求，尚不清楚为何会这样。
2016 年 5 月，在爱尔兰科克举行了一次主题为“神经退行性疾病姑息治疗，重点是痴呆症”的跨学科研讨会。该研讨会的主要目的是讨论痴呆症患者姑息治疗的证据基础，确定临床研究的“空白”，并为跨学科研究实践提出建议。为了在全天的讨论中引领讨论，邀请了一个多学科专家小组参加，其中包括来自爱尔兰和英国的研究人员和临床医生。向与会者发出了有针对性的邀请，以确保所有利益攸关方都出席会议，为讨论做出贡献。共有 49 名代表 17 个不同学术和实践环境的专家参加了会议。根据先前确定的研究重点（例如，詹姆斯林德联盟）和利益攸关方的投入，预先选择了关键讨论主题。关键讨论主题包括：i. 痴呆症患者的预先护理计划；ii. 临终痴呆症护理中的人格；iii. 在家中护理晚期痴呆症的主题。这些主题被用作起点，研讨会的精神是与会者可以在任何相关领域激发讨论和辩论，而不仅仅是总结为 iv. 其他重点的关键主题。
可以改善痴呆症患者及其家人的护理体验；姑息治疗框架在这方面可能有很大的帮助。然而，需要有坚实的证据基础将姑息治疗转化为痴呆症的实践。本文提出了建议的研究重点，作为建立这一证据基础的起点。跨学科的研究和重点制定方法对于在这一领域发展可操作的知识至关重要。
