Palliative and End-of-life Care Research

It is widely acknowledged that a severe lack of knowledge exists for the area of palliative and end-of-life care, in particular for care of persons with neurodegenerative diseases such as dementia.

The JPND Research Strategy recommends that further research should be undertaken to inform palliative and end-of-life care, which should appropriately integrate research into the complex ethical issues relating to neurodegnerative diseases.

A JPND Action Group on Palliative and End-of- Life Care has developed recommendations for JPND-supported actions in this area and reported the JPND Management Board in December 2014.

Implementation of JPND actions in this area will be based on the advice in the report. These actions may include shared working across JPND member countries, funding of competitive calls, coordination of best practices and organization of transnational initiatives designed to share knowledge and provide training that does not currently exist in this research field.

The report to the JPND Management Board is available for download at the link at the bottom of this page.

Expert-led Workshop, Amsterdam, June 25th, 2014

Participants at the JPND Palliative Care research workshop in Amsterdam on June 25th, 2014

The JPND Action Group on Palliative Care organised an expert-led workshop in Amsterdam airport on June 25th, 2014 to identify capacity-building and integrative research opportunities in this area, and to recommend future JPND actions and activities. Workshop agenda and presentations are available at the links below.

Workshop Agenda (click to download)

Palliative care for patients with progressive neurological diseases (click to download slides)

  • David Oliver, University of Kent, United Kingdom
    (Including an overview of a consensus paper on available evidence)

Palliative Care for Neurodegenerative Diseases, in particular Dementia (click to download slides)

  • Jenny van der Steen, VU University Medical Center, The Netherlands
    (Including an overview of the EAPC White paper)


Action Group Report to JPND Management Board