Modelling the landscape of palliative care for people with dementia: a European mixed methods study

BMC Palliative Care

Debate

Birgit Jaspers¹  Lukas Radbruch²  Elena Mariani³  Yvonne Engels⁴  Dagny Haugen⁵  Ragni Sommerbakk⁶  Laura Maio⁷  Steve Iliffe⁷  Nathan Davies⁷  Myrra Vernooij-Dassen⁸  Jasper van Riet Paap⁸  Jill Manthorpe⁹ 

[1] Department of Palliative Medicine, University Hospital Bonn, Bonn, Germany;Department of Palliative Medicine, University Hospital Bonn, Bonn, Germany;Centre for Palliative Medicine, Malteser Hospital Bonn/Rhein-Sieg, Bonn, Germany;Department of Psychology, University of Bologna, Bologna, Italy;Department of anesthesiology, Pain and Palliative Medicine, Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands;European Palliative Care Research Centre, Department of Cancer Research and Molecular Medicine, Faculty of Medicine, Norwegian University of Science and Technology, Trondheim, Norway;Palliative Care Research Centre, Department of Cancer Research and Molecular Medicine, Faculty of Medicine, Norwegian University of Science and Technology, Trondheim, Norway;Research Department of Primary Care & Population Health, University College London, London, England;Scientific Institute for Quality of Healthcare (IQ healthcare), Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands;Social Care Workforce Research Unit, Kings College London, London, England;

关键词: Dementia;    Palliative Care;    Quality Indicator;    Nominal Group;    Palliative Care Service;   

DOI  :  10.1186/1472-684X-12-30

 received in 2013-04-05, accepted in 2013-08-02,  发布年份 2013

来源: Springer

【 摘 要 】

BackgroundPalliative 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.DiscussionA 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.SummaryThe 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.

【 授权许可】

CC BY   
© Iliffe et al.; licensee BioMed Central Ltd. 2013