Palliative and End of Life Care

The INTERDEM Spotlights webinar series was initiated by the junior board members of INTERDEM, Esther Gerritzen and Sara Laureen Bartels, to bring together INTERDEM and INTERDEM academy members to learn across career stages and disciplines, and is organized in collaboration with INTERDEM Academy, Fania Dassen and Caitlin Hibbs. On the 5th December, the INTERDEM Taskforce on Palliative and End-of-Life Care hosted the latest webinar in the #INTERDEM Spotlight Series.

Emma Wolverson, speaking on behalf of the Taskforce she co-leads with Jenny van der Steen, opened the session by introducing this dynamic group. Established in 2023, it is one of INTERDEM’s newer Taskforces. The group now has 40 members, including 12 Academy members, and meets bimonthly online as well as in person at the annual INTERDEM meeting. Members come from the UK, Netherlands, France, Switzerland, Belgium, and Brazil—and the group is open to new members!

The Taskforce is highly active, with three main workstreams identified by members. Today’s webinar showcased progress from each of these streams:

Workstream 1: Spiritual and Psychosocial Support

Emma Wolverson and Andreia Fonseca De Paiva (academy member) presented findings from a recently published scoping review exploring spiritual support for people living with dementia and their caregivers. This work complements a meta-review and synthesis led by Nathan Davies on psychosocial interventions at end of life. Together, these reviews will inform discussions on whether the White Paper on Optimal Palliative Care for People with Dementia should be updated—particularly Domain 8: Spiritual and Psychosocial Support.

Workstream 2: Mapping Palliative Care Provision

Jean- Bernard Mabire shared progress on mapping palliative care provision for people with dementia across Europe. To date, the team has mapped 33 countries, examining whether they have national palliative care plans or strategies, and identifying where standards or guidelines specifically address dementia. This work is invaluable for researchers and practitioners alike. Next steps include comparing similarities and differences between countries, particularly regarding specialist recommendations for dementia care.

Workstream 3: Assisted Dying and Dementia

To conclude, Arlene Astell presented work from the third workstream, which focuses on assisted dying legislation and its relevance to dementia. Arlene has led efforts to map legislation internationally, and this work is currently being prepared for publication.

After the last presentation we had a lively group discussion where members shared policies and practices around advance care planning and end-of-life care in their own countries.

If you are interested in joining the Taskforce, please contact Emma Wolverson at:
emma.wolverson@uwl.ac.uk