Research Department of Primary Care & Population Health, University College London, London, England.
BMC Palliat Care. 2013 Aug 12;12(1):30. doi: 10.1186/1472-684X-12-30.
Palliative care for people with dementia is often sub-optimal. This is partly because of the challenging nature of dementia itself, and partly because of system failings that are particularly salient in primary care and community services. There is a need to systematize palliative care for people with dementia, to clarify where changes in practice could be made.To develop a model of palliative care for people with dementia that captures commonalities and differences across Europe, a technology development approach was adopted, using mixed methods including 1) critical synthesis of the research literature and policy documents, 2) interviews with national experts in policy, service organisation, service delivery, patient and carer interests, and research in palliative care, and 3) nominal groups of researchers tasked with synthesising data and modelling palliative care.
A generic model of palliative care, into which quality indicators can be embedded. The proposed model includes features deemed important for the systematisation of palliative care for people with dementia. These are: the division of labour amongst practitioners of different disciplines; the structure and function of care planning; the management of rising risk and increasing complexity; boundaries between disease-modifying treatment and palliative care and between palliative and end-of-life care; and the process of bereavement.
The co-design approach to developing a generic model of palliative care for people with dementia has placed the person needing palliative care within a landscape of services and professional disciplines. This model will be explored further in the intervention phase of the IMPACT project.
痴呆症患者的姑息治疗往往不尽如人意。这部分是因为痴呆症本身具有挑战性，部分是因为在初级保健和社区服务中特别明显的系统故障。需要将痴呆症患者的姑息治疗系统化，明确可以在哪些方面改变实践。为了制定一种适用于欧洲各地的痴呆症患者姑息治疗模式，采用了技术开发方法，结合使用混合方法，包括 1）对研究文献和政策文件进行批判性综合，2）对政策、服务组织、服务提供、患者和照顾者利益以及姑息治疗研究方面的国家专家进行访谈，以及 3）指定的研究人员名义小组负责综合数据和模拟姑息治疗。
一种姑息治疗通用模型，可以嵌入质量指标。拟议的模型包括被认为对痴呆症患者姑息治疗系统化很重要的特征。这些特征是：不同学科从业者之间的分工；护理计划的结构和功能；风险上升和复杂性增加的管理；疾病修正治疗与姑息治疗之间以及姑息治疗与临终关怀之间的界限；以及丧亲之痛的过程。
为痴呆症患者制定姑息治疗通用模型的共同设计方法将需要姑息治疗的人置于服务和专业学科的背景下。该模型将在 IMPACT 项目的干预阶段进一步探讨。
