European model of palliative care for dementia: Study protocol

Introduction Despite increasing attention in the past decade there is still little published work on palliative care (PC) and dementia. There is consensus that there is a need to improve the organisation and structure of PC services for dementia, however little is published on the problems and issues.

Aims and Methods To develop a model of PC for dementia suitable for European health care systems. We will present the process of developing the model and identifying quality indicators for palliative care in dementia. A mixed methodology is being used starting with document analysis to identify information on healthcare systems and PC. Semi-structured interviews using closed and open questions, aided by the use of vignettes, will be conducted with policy makers and professionals from micro (practitioner), meso (management & support services) and macro (policy) levels of the NHS and social care. This will include professionals from four settings (primary care, care homes, hospitals and hospices). Systematic reviews have been undertaken for reviews of policy for PC for dementia, education in PC for dementia, and carers' perspectives on PC for dementia. A consensus conference in February 2012 will synthesise the evidence to produce the model.

Results Results of the interviews from five European centres; England, Germany, Italy, the Netherlands and Norway will be presented together with results from document analysis.

Conclusion A mixed methodology approach is workable across Europe and yields a complex model of PC in which a range of quality indicators can be applied.