The Palliative and End of Life Care Taskforce


Established in October 2023, the Palliative and End of Life Care Taskforce was created to advance care for people with dementia during the most critical stages of life. This collaborative initiative brings together researchers who are passionate about improving palliative and end-of-life care. The taskforce serves as a hub for sharing research initiatives, findings and publications, identifying gaps in current knowledge, fostering new collaborations, and providing a space for discussion on emerging research ideas.

Our members come from the UK, France, Belgium, Italy, Norway, the Netherlands, Switzerland, and Brazil. We are especially keen to welcome more members from Eastern European countries to broaden our perspectives. We’re proud to have strong involvement from INTERDEM Academy members and are committed to supporting early career researchers in this field.

Our Aims

  • Promoting Collaboration

To foster international partnerships and encourage the exchange of knowledge and expertise across disciplines and borders.

  • Disseminating Knowledge

To share research findings, best practices, and innovations with researchers, practitioners, and policymakers, ensuring that evidence informs care and decision-making.

  • Addressing Research Gaps

To identify and tackle current gaps in the evidence base, generating impactful research that enhances palliative and end-of-life care for people affected by dementia and informs policy and guidance in this area.

Taskforce Activities and Workstreams

The Taskforce meets online every other month and meet in person annual at the Alzheimer’s Europe Conference. We currently have three active workstreams, each addressing key areas in palliative and end-of-life care for people with dementia:

1. Psychosocial and Spiritual Care at End of Life

The EAPC white Paper on optimal palliative care for people with dementia1 highlights the importance of psychosocial and spiritual care in its eighth domain. Now over a decade old, the Taskforce set out to explore whether new research has emerged to inform and update its recommendations.

  • The group also collaborated on a scoping review focused on spiritual support interventions2.
  • A review of reviews, led by Professor Nathan Davies, examined recent evidence on psychosocial interventions3.

These efforts aim to ensure that care remains up to date, person-centred and evidence-based.

2. Mapping Palliative Care Provision Across Europe

Led by Dr. Jean-Bernard Mabire and Dr. Ana Barbosa, this workstream is mapping the provision of palliative care services across Europe. The findings:

  • Provide a valuable foundation for future research.
  • Highlight inconsistencies and gaps in service provision.
  • Have already attracted interest from other researchers requesting access to the data.

The group is currently preparing a publication to share these insights more widely.

3. Professional Skills in Responding to Requests for Assisted Dying

Professor Arlene Astell and Professor Anne Marie Mork Rokstad are leading work on the skills and confidence of health and care professionals in responding to requests for assisted dying—regardless of whether such practices are legal in their country.

This work will explore:

  • How professionals can be best prepared and supported.
  • The importance of responding in an open, respectful, and person-centred manner.
  • Ethical and emotional challenges faced by professionals in this sensitive area.

What’s Next?

  • Expanding Membership
    We aim to grow our network, particularly by welcoming more researchers from Eastern European countries and other underrepresented regions.
  • Upcoming Publications
    Our teams are working on publications, including findings from the mapping of palliative care provision and reviews on spiritual care.
  • New Workstreams
    We are exploring the development of additional workstreams based on emerging research needs and member interests.

Get Involved – Join the Network!

If you are interested in joining the network email emma.wolverson@uwl.ac.uk

Written by: Emma Wolverson (Dementia UK and University of West London), Karen Harrison Dening (Dementia UK and De Montfort University, Leicester) and Jenny van der Steen (Leiden University Medical Center and Radboudumc Alzheimer Center) on behalf of the INTERDEM Palliative and End of Life Care Taskforce.

References:

1 Van der Steen, J.T., Radbruch, L., Hertogh, C.M., de Boer, M.E., Hughes, J.C., Larkin, P., Francke, A.L., Jünger, S., Gove, D., Firth, P. and Koopmans, R.T., 2014. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliative medicine, 28(3), pp.197-209.

2 Wolverson, E., Backhouse, T., Burnand, A., Ericksen, S., Fonseca de Paiva, A., Harrison Dening, K., Mabire, J., Sabatini, S. and van der Steen, J. (under review). Spiritual Support for People affected by Dementia: A Scoping Review.  

3 Davies, N., Barrado-Martín, Y., Aworinde, J., Vickerstaff, V., Moore, K., Kenten, C., McMullen, S., Evans, C. and Sampson, E.L., 2025. A meta-review and synthesis of the effectiveness of psychosocial interventions for people living with dementia nearing the end of life and their family carers. International Psychogeriatrics, p.100068.