Dementia end of life care: Community of Practice (CoP) meetings

The Community of Practice, set up to support practitioners and clinical leaders in palliative and end of life care, for people and their families affected by dementia, meets twice a year.

(Please note these are historical meeting records. We now provide a curriculum of your choice via our  Palliative and End of Life Care and Dementia ECHO Network). 

If you would like to find out more about this network, please contact

Meetings 2020

26 October 2020

At our Webinar on Advance Care Planning, we were very pleased to have the following speakers:
Dr Julie Kinley, Research and Clinical Innovation Project Lead, Hospice UK
Dr David-Peter Lynch, Specialty Doctor in Palliative Care, Ardgowan Hospice
Dr Tracy O’ Regan, Society & College of Radiographers


See the presentations from the day which also provide links to further resources

29 June 2020

We were delighted to welcome Professor Justine Schneider who presented on 'Emotional Labour and Hospital Health Care Assistants'. Professor Schneider talked about the play 'Inside out of Mind' which was written by Tanya Myers to increase understanding and awareness of dementia and dementia care, using the results of research carried out in 2005.


About Professor Schneider
See a clip from 'Inside out of Mind' on You Tube
Find out more about the play 'Inside out of Mind'
See the presentation from the day

15 June 2020

This included a presentation by Dr Jane Rowley on the Nottingham DEEP Support Hub and how they have adapted service delivery in response to COVID 19. We also have notes from the break out discussions that took place.


1 June 2020

This included a presentation from Liz Bryan, Palliative Care Nurse, Counselling Psychotherapist and Educationalist, on 'How to work at the frontline during COVID-19 and survive'. Liz introduced her new mnemonic S-T-R-E-T-C-H, designed especially to encourage self-care at a time of significant uncertainty, loss and adjustment.


Download the presentation from the day

18 May 2020

Thank you to all who joined our webinar on the 18 May 1 – 2.30pm. The focus was once again on the Community of Practice sharing, learning and supporting in our current climate with an update on the care home perspective.


4 May 2020

Thank you to all who attended our webinar and engaged in our lively break out sessions: to equip and sustain good practice when caring for people with dementia and their carers in the context of COVID-19


Previous meetings

For access to the resources from each meeting, please click on the hyperlinks indicated.

17 October 2019

Dementia Community of Practice ‘New Horizons’ meeting 17 October 2019

Thank you to all who attended for an insightful and productive day. Significant commitment was achieved for future ECHO Dementia activity.

Speakers included: Karen Harrison Dening, Head of Research and Publications, Dementia UK and Liz Bryan, Education Consultant, St Christopher's.

You can download a copy of the programme for more details about the day. 


See the presentations

11 June 2019

We had an informative and useful ECHO session via Zoom. We brought together practitioners and clinical leaders keen to build their skills, knowledge and confidence. ECHO members and the meeting attendees can find out more about that meeting.

5 December 2018

We were delighted to host a variety of speakers including:

Dr Karen Harrison Dening, Head of Research and Publications, Dementia UK, who presented  'Relationship centred care and frailty in spousal carers.' Karen's slides are available here.

Caroline Mogan, PhD Student, Academic Palliative and Supportive Care Studies Group (APSCSG), Institute of Psychology, Health and Society who gave us a first look at her PhD project 'How can we support people with dementia who wish to die at home?’ You can view Caroline's slides here.

Michael Verde, Memory Bridge and Evelyn Glennie, Percussionist for 'Love is Listening', a film by Memory Bridge. You can find out more about Memory Bridge here.

4 September 2018

 We had our first Curriculum Planning ECHO meeting. If you have not already joined the Dementia Community of Practice ECHO Network, you can join here. Once you've joined the network, you will have access to the recording and slides from the meeting. 

4 July 2018

We launched our first ever Dementia Community of Practice ECHO knowledge network. You can find out general information about Project ECHO here . As our community grows and grows  we want to open it up in more accessible ways for all of you around the country.

5 December 2017

We were delighted to host  Dr Jenny Van der Steen from University Medical Center Amsterdam, Netherlands as our key note speaker. Jenny Van der Steen has focused her work on end-of-life care for older people, in particular, people with dementia and nursing home residents. She is an editor of Palliative Medicine. She authored the European Association for Palliative Care (EAPC) white paper on palliative care in dementia with recommendations for practice, policy and research.

A copy of the minutes from the day can be found here

14 June 2017

In June this year we held our Community of Practice event. The focus of the day was to consider the legal and ethical issues around caring for people with dementia around end of life. Dr Shibley Rahman was our key note presenter and using his extensive professional expertise set out for us a series of fundamental key issues which one would need to be mindful of in the day to day aspects of care and then set us the challenge through case study discussion on how they may be applied. 

Working in small groups we discussed the various scenarios. As you can imagine, this led to real reflection and learning as we considered the implications to practice.

What is clear is that sometimes doing what is required by law or adhering to one’s professional code may bring one into conflict with what may feel ethically is ‘doing the right thing‘ such as the adoption of therapeutic lying and covert medicating. This can create an ethical dilemma which can be very challenging hence it is essential for all practitioners to understand the legal, professional and ethical frameworks which they apply to their decision making and practice. Through group discussion it became apparent how such decision making is integral to all aspects of the care delivered by practitioners on a daily basis. 

A copy of Dr Shibley Rahman's presentation together with an overview of aspects of the Mental Capacity Act 2005 are available to download.

14 December 2016

Held on 14 December 2016 'Pain and Dementia - what do we know and what can we do' was an excellent event with over 75 delegates from a range of care settings. A great summary of the event, written by Eleanor McConnell, offering very valuable information and insights is available to download. You can also download presentations from the day together with the pain tools referred to in the presentations by Jane Chatterjee and Emily Pardoe-Billings

22 June 2016

The Dementia end of life care: Community of Practice (CoP) met on 22 June at Hospice House for another fascinating day bringing together information from inside and outside the sector.

Download a copy of Dr Ros Taylor MBE's ehospice article, which provides a review of the day. Presentations from the day are also available for you to download.

16 December 2015

The Dementia and end of life special interest group met for the second time on Wednesday 16 December, jointly hosted by Dementia UK and Hospice UK. It was a packed agenda, with high quality presentations and time for group discussion. Although the majority of the 35 participants were from hospices, it was great to have colleagues such as Admiral Nurses and those with a community-focused role leading on exciting cross-organisational partnership working. The day’s agenda sought to respond to the request from those who attended the first event which was obtained using the Nominal technique. Findings will soon be published in the BMJ End of Life Care Journal.

Download a summary of the sessions for more information.

22 June 2015

The first meeting took place on 22 June 2015 at Hospice House and was very well attended with 35 passionate experts from a wide range of care settings including mental health care, hospitals, community and hospices. We also have colleagues from care homes that are very keen to engage in the SIG.

Outline of the day

Marie Cooper welcomed everyone on behalf of Hospice UK and Dementia UK and gave the background to why the SIG was established and its very early intended objective, which is to bring to together colleagues with an interest in dementia in end of life care to form a learning community.

Linda McEnhill, Family Support Services, The Prince and Princess of Wales Hospice, Glasgow and Member of Hospice UK’s Care Support Team, offered a succinct overview of the demographics of the disease and how it is impacting on both the immediate family and wider society. The key point Linda makes so cogently and without compromise is that people with dementia have a life-limiting disease and by right have access to hospice enabled dementia care.

Dr Karen Harrison-Dening, Director of Admiral Nursing, Dementia UK, followed on with more insights and brought into focus the challenges and barriers to palliative care provision with a particular focus on the often ignored needs of the family carer.

We were very keen to ensure we heard from participants about what were the themes relating to their work they would want the SIG to address. To this end Karen facilitated 'a nominal group' exercise, which enabled ranking of themes to be determined. Approximately 20 themes were identified and after some lively interactive group discussion we agreed they would merge well down to 15. Findings from the exercise will be posted on our website.

The top two themes were:

  • Developing staff communication skills with the person with dementia.
  • Meeting the educational needs of the team.

We will ensure that as we plan the agenda for the next meeting these themes will be prioritised, however we recognise that there is a need and a wish for sharing of information sooner rather than later on a range of issues and to support this we will host links to useful resources.

Marie presented the framework from the 'Hospice enabled dementia care' report and invited members to spend time with their key colleagues back in the workplace to consider next steps for their organisation or team. Copies of the checklists contained in the publication were shared as a separate document. As in any new initiative it is vital to know who the key stakeholders are and what their position is in relation to supporting your work. To help identify them we undertook a 'stakeholder analysis‘ exercise and considered a range of varying communication and inclusion strategies which could be employed. We will revisit this at our next meeting to see ‘how did it go?’

We also discussed how members would like to engage with each other and also the future Terms of Reference for the SIG. It was agreed that the ‘ask a colleague’ resource would be very welcome. This will enable members to ask the SIG questions and seek advice from each other. Simply send your query to Amber Morgan (SIG administrator) who will send it out to the SIG. SIG members will then reply to you if they can assist. All we ask of you is for you to write a very brief summary of the replies (no names required) that we can then share with the wider group.

The Terms of Reference will be on the agenda for our next meeting, allowing everyone to give it some thought and consider what they would like the SIG to address.

We know many of you could not attend this event but are keen to join the SIG. We do hope you got a sense of the day from reading this and found the presentations helpful. Please do not hesitate to get in touch with us if you have any queries about the SIG and please feel free to get your questions out there.

The date for the next meeting is to be confirmed and we are looking at a range of locations around the country to host the meeting, if you have any suggestions please contact us.

  • Oct 02, 2017
    Conundrums in Practice
    As part of the June meeting, we captured the group discussion feedback on the case scenarios provided by Dr Rahman and translated them into a facilitated discussion resource for you to use with your colleagues.
  • Dec 14, 2016
    Abbey Pain Scale example
    Example of the Abbey Pain Scale referred to in the presentation made by Emily Pardoe-Billings and Sophie Meredith, Dementia Support Worker: Care Improvement and End of Life, St Giles Hospice and Pathways 4 Life.
  • Jun 22, 2015
    All presentations from the 'Dementia in end of life care: special interest group' meeting 22 June 2015
    Presentations from Linda McEnhill, Family Support Services, The Prince and Princess of Wales Hospice, Glasgow and a members of Hospice UK's Care Support Team; and Dr Karen Harrison-Dening, Director of Admiral Nursing, Dementia UK.
  • Dec 14, 2016
    Example of the Disability Distress Assessment Tool
    Disability Distress Assessment Tool (Dis DAT) referred to in the presentation by Jane Chatterjee, Lecturer in Palliative Care, St Gemma’s Hospice.
  • Mar 27, 2015
    'Hospice Enabled Dementia Care – First steps' checklist
    This checklist enables dementia care hospice leaders to assess their organisational readiness and current practice against the five domains which need to be considered.
  • Pain and Dementia: what do we know and what can we do? Presentations from 14 December 2016
    Presentations by Dr Liz Sampson MD MRCPsych, Reader, Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London and Consultant in Liaison Psychiatry (Older People), North Middlesex University Hospital; Jan Leeks, Senior Lecturer, University of Hertfordshire and Nurse Consultant Dementia Care, Hertfordshire University Partnership Foundation Trust; Jane Chatterjee, Lecturer in Palliative Care, St Gemma’s Hospice; Emily Pardoe-Billings and Sophie Meredith, Dementia Support Worker: Care Improvement and End of Life, St Giles Hospice and Pathways 4 Life; Ann Regan, RGN, RMN, Specialist Nurse in Dementia for end of life, Willow Wood Hospice and Karen Harrison Dening, Director of Admiral Nursing Dementia UK
  • Jun 22, 2016
    Presentations from the Dementia End of Life: Community of Practice meeting – 22 June 2016
    Presentations from Dr Rammya Mathew, Academic Clinical Fellow in General Practice, University College London; Sue Foster, Lecturer in Palliative Care and Head of Education, Northern Ireland Hospice: Sandra Jones, the Sunflower Centre Manager, East Cheshire Hospice; Niamh O'Donoghue, Care Assistant, at Dudbrook Hall Essex; Lyn Andrews, Head of Nursing and Samantha Bemrose, Registered Nurse – Dementia Lead from St Andrew’s Hospice and Dr Karen Harrison-Dening, Director of Admiral Nursing, Dementia UK.

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