Empowering Better End-of-Life Dementia Care (EMBED-Care) Programme

Sophie Crawley is a Research Assistant and Doctoral Research Fellow in the Marie Curie Palliative Care Research Department, University College London. Here, she introduces EMBED-Care; the ground-breaking research programme aiming to significantly improve palliative and end-of-life care for people with all types of dementia in the UK. EMBED-Care is a joint collaboration between the Marie Curie Palliative Care Research Department, University College London and the Cicely Saunders Institute, King’s College London.  


Sophie Crawley.

Dementia is the commonest cause of death in the UK. One in three of us will die with dementia. Globally, Alzheimer’s disease and other dementias are the seventh most common cause of death.1 Currently, not everyone who dies with or dies from dementia receives appropriate high-quality end-of-life care and we do not fully know what is needed.

The UK’s EMBED-Care Programme 2 aims to address this pressing issue by developing and evaluating a new approach to ensure that palliative care is a vital part of dementia care across health and social care services, regardless of a person’s age or dementia stage or type. To increase our knowledge about what people need, we are starting a large cohort (group) study of people with dementia who may be nearing the end of their lives.

What do we hope to find out?

We will be talking to nearly 300 people living with dementia, their family or friend carers, as well as their healthcare professionals. We are recruiting people at any stage of dementia who have had an unplanned hospital admission as we know that this may be a marker that they are nearing the end of life. We will collect information on their unmet needs for up to 12 months and identify how these needs may impact on comfort, quality of life, the use of services and care transitions. We also want to understand why people with dementia are admitted to hospital towards the end of life and reduce burdensome hospitalisation when there is limited benefit for the person with dementia and their carers.

We will also explore family carers’ experiences of how care and services support them in their caring role. This is of particular interest to me as my PhD is looking at how a supportive care network can help carers cope with day-to-day stresses and feel emotionally supported.

We are running two innovative smaller cohort studies to develop crucial new knowledge and insights into unmet needs for people with Young Onset Dementias and Prion disease.

How will we use this new information?

We aim to empower people living with dementia, carers and staff to identify and address changing physical, psychosocial and spiritual needs with disease progression. The novel cohort study will generate new knowledge from people living with all types of dementia, carers and healthcare professionals. It will deliver a framework of palliative care for people affected by dementia. The framework is underpinned by conceptual understanding on priorities for palliative dementia care in the published evidence and policy, and analysis of anonymised clinical data on transitions in care settings towards the end of life. We have worked with people affected by dementia to ensure their needs are at the heart of our research and our new approach to dementia palliative care. We will use a co-design approach, which involves working together with people living with dementia, their family carers and professionals. Guided by their knowledge and experiences, we will collaboratively develop a service delivery intervention of integrated palliative dementia care. We will then evaluate this, to understand how well this works across settings from the home, care home and hospital to ensure it is practical, feasible and useful.

If you’d like to to learn more about the programme and its progress, to contact the team, or sign up for our newsletter, please visit the EMBED-Care website: www.ucl.ac.uk/embed-care.

References

1.WHO, The top 10 causes of death https://www.who.int/news-room/fact-sheets/detail/the-top-10-causes-of-death [accessed 27.01.21]

2.Sampson, E.L. et al. (2019) Empowering Better End of Life Dementia Care (EMBED-Care): A mixed methods protocol to achieve integrated person-centred care across settings. International Journal of Geriatric Psychiatryhttps://doi.org/10.1002/gps.5251

More about the author

Sophie Crawley is a Research Assistant on the EMBED-Care Cohort Study and a PhD student on the EMBED-Care Programme based in the Marie Curie Palliative Care Research Department at UCL. Sophie’s PhD is focussed on exploring the relationship between grief, burden and the role of social support and co-ordinated care in family carers of people living with dementia. Sophie has had various roles working with people with dementia and family carers, from quality improvement programmes of acute wards.

Links

  • Professor Liz Sampson is the Principal Investigator of EMBED-Care based at University College London and Dr Catherine Evans is the Co-Principal Investigator based at King’s College London.
  • Read more posts about dementia and palliative care on the EAPC blog.

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“Galilee” Palliative Care Centre: A Greek Palliative Care Story

Galilee Palliative Care Centre, on the outskirts of Athens, provides palliative medical and nursing care, as well as psychological, social, and spiritual support to patients and their families, the first service to offer such a comprehensive range of support in Greece. Aliki J Tserkezoglou MD, PhD, Vice-President, tells us more…


Dr Aliki J Tserkezoglou (front row, third from the left) with members of the Interdisciplinary Team. (Photo: ⓒ  Galilee Palliative Care Centre).

An enlightened monk, ex NASA physicist, becomes a Bishop in 2004 and a small group of healthcare professionals, with a background in oncology, share his vision to help chronically ill cancer patients at the end of their lives. And so “Galilee’s” story begins.

Since there is no model locally, expertise has to be imported from abroad. Trainers from HOSPICE Casa Sperantei in Brasov, Romania, undertake the theoretical and clinical training of the first team. The diocese provides the premises as well as financial and legal support. A six-member interdisciplinary team (IDT) is licensed to provide home care, since there is no functional legislative framework specific to palliative care (PC) in Greece – and on 1 March 2010 the journey begins.

Starting from scratch, with no national standards, means that procedures need to be established, guidelines translated and modified, and patients, healthcare professionals and the public need to be informed about this unknown service. Hence the need to develop educational programmes, as well as raising the necessary funds, since services are provided free of charge and there is no government reimbursement.

Networking began early and a memorandum of collaboration was signed with the Athens Cancer hospital in 2010 and later, in 2016, with the Department of Neurology of Athens University, promoting referral of patients with amyotrophic lateral sclerosis.

Volunteers enthusiastically embraced the cause and soon a volunteer training programme was established, and activities launched. The most prominent activity was the setting up and operation of a day centre in November 2011, followed in 2015 by a bereavement support service under the supervision of the IDT.

In 2013, a National Strategic Reference Framework Program was granted, allowing “Galilee” to recruit and train 10 more IDT members who, besides providing care, developed an online electronic patient record, an out-of-hours service and quality accreditation procedures (ISO 9001/2009).

“Galilee’s” nine-bed hospice was inaugurated in January 2018, being licensed as a specialised unit of the adjacent long-term facility for older people, thus overcoming the existing legislative gap.

Besides service provision, “Galilee” has been involved in theoretical (12 seminars for 300 participants) and hands-on training of more than 100 health and social care professionals, as well as in clinical research undertaking the translation and validation of the Greek IPOS tool (Integrated Palliative care Outcome Scale).

Advocacy and raising public awareness have been pursued through press releases, media interviews, on-site gatherings (open house), artistic events, as well as through the development of “Galilee’s” website and social media profile, notwithstanding collaboration with officials in the Ministry of Health and participating in the National Committee for the Strategic Development of Palliative Care in Greece.

Eleven years later, “Galilee” is still the only comprehensive palliative care service for adults in Greece, as the recent feasibility study of the above National Committee testifies, still operating without government support and under a questionable legislative status. Regardless of Greece’s recession in the past 10 years, “Galilee” has managed to raise its staff to 41 and increase its budget five times, in order to serve around 350 patients and their families a year.

Reference

Greek Palliative Care Feasibility Study.

Links

  • Galilee Palliative Care Centre website (in Greek and English).
  • Follow us on Facebook.
  • Contact Dr Aliki J Tserkezoglou by email.

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Fellowship programme goes online and unites palliative care pioneers from across the world

The limitations imposed by the Covid-19 pandemic have brought some unexpected gains including a surge in participants for the Palliative Care Fellowship, a unique training programme delivered jointly by educators and practitioners from India, Bangladesh and the United Kingdom.

Professor Heather Richardson, Joint Chief Executive, St Christopher’s Hospice, London, and Honorary Professor, Lancaster University, UK, and Dr Libby Sallnow, Senior Clinical Academic at St Christopher’s, and Palliative Care Consultant at Central and North West London NHS Trust, UK, explain.


Left to right: Dr Libby Sallnow and Professor Heather Richardson.

For five days during the first week in February, 136 delegates from 43 countries logged on to participate in the Palliative Care Fellowship – the third time this course has taken place, but the first time online.

The Fellowship is a partnership between St Christopher’s Hospice London, UK, the Institute of Palliative Medicine Kerala, Sanjeevan Palliative Care Project Puducherry, both in India, and Bangabandhu Sheikh Mujib Medical University, Bangladesh. It builds on a shared belief in the power of learning through membership of a vibrant, connected community as well as the need to identify and promote new models of palliative care globally.

The Fellowship goals

The ambition for the Fellowship is to identify and support new leaders; those who, despite huge challenges, are transforming end-of-life care. These people, in the eyes of the programme organisers, are starting from the right place, where community involvement is paramount, and power is shared with citizens. The aim of the Fellowship is to focus on big picture strategy and resource allocation and consider how to deliver and grow services in low- and middle-income countries, including and beyond clinical care.

Move online broadens Fellowship

The two previous Fellowship courses have been hosted at the Institute of Palliative of Medicine in Kerala which has, under Dr Suresh Kumar’s leadership, championed a community approach to palliative care.

The limitations imposed by COVID-19 did bring some gains. Delegate numbers trebled from the 40 who travelled to India in previous years. And being online, it was possible to accommodate different time zones, with the course running in the late morning, afternoon and early evening in the eastern hemisphere, and in the mornings and afternoons for those in the west.

There are real benefits to being online. It undoubtedly helped to democratise learning and increase numbers, and by pricing it at $100 we’ve always aimed to make it accessible to all. As well as wider participation, this format gave a voice to people who might not get to contribute to a traditional conference. Delegates from countries as diverse as Iran, Chile, The Maldives and Bhutan have participated this year.

People joining from their clinic or kitchen table have been able to network, articulate their challenges, come up with solutions and then receive real time feedback from palliative care leaders around the world. Relationships are growing between participants as they get to know each other. Some delegates discovered ‘colleagues’ in their own countries that they never knew existed and this is helping them jointly to advocate palliative care and influence policy in their regions.

Fellowship structure

The course began with a one-week intensive programme in early February 2021. Participants subsequently meet formally on a monthly basis for five months for further learning as well as accessing optional workshops at weekends. The programme includes lectures, workshops, group work, assignments and an exam. The hope is that pandemic permitting, a cohort will be able to travel to meet face to face in India in September.

Amongst the feedback we’ve received from delegates, Catherine Ooi, General Manager of Kasih Hospice Foundation in Malaysia, said:

“I think I will emerge from the programme more certain of my values and my direction. And with a new, far better map to help me navigate.”

While Archana Ganesh, Assistant National Information Officer for the Indian Palliative Care Association said:

“There is such an enormous networking and cross fertilization of ideas and concepts which one would have never had access to otherwise.” 

The organisers look to continue to grow the Fellowship to address the inequities in end-of-life care by sharing these ideas and concepts from around the world.

Links

Read more posts from Heather Richardson/St Christopher’s and Libby Sallnow on the EAPC blog.

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Reaching out to the world: Massive Open Online Course (MOOC) Improving palliative care in care homes

Research only makes an impact to benefit people if it is implemented, warns Professor Sheila Payne, Emeritus Professor, International Observatory on End of Life Care, Lancaster University, UK. Here, she explains how the findings of the European-funded PACE project have been adapted to a programme to improve palliative care in care homes and reinforced by a free online course.  


Professor Sheila Payne.

The aim of our online educational programme (MOOC) is to help people across the world to develop and refine palliative care offered in nursing and care homes for older people. It is based on the outcomes of a large international European Commission funded project called PACE (Palliative Care for Older People). During the study, the Lancaster University team designed and adapted to a European context a six-step programme to enable staff in care homes to increase their knowledge of palliative care and to implement change.1 This intervention was tested in a cluster randomised control trial in nursing homes in seven European countries.2 However, research only makes an impact to benefit people – if it is implemented.

So, we have been delighted to welcome more than 4,000 people from 126 countries who registered to join our FutureLearn-based MOOC called Improving Palliative Care in Care Homes. The map below shows the countries that people are from in 2021, with the largest group (38%) from the UK, followed by India (9%) and Australia (5%). Perhaps, not surprisingly, most participants are in the age range 26-45 years (39%) as the course is aimed at care workers and health professionals based in nursing and care homes. We previously ran the MOOC in 2019 and again at the start of the pandemic in March 2020. Feedback indicates that the course has been helpful by increasing knowledge about how to implement the programme and enables participants to share their experiences of caring for frail older people in nursing homes.

Here are quotes from two participants:

“I have enjoyed learning about the PACE program […] What was surprising is how structured, yet simple, the program is.”

“Very insightful and shows that both management and staff need to be motivated and show commitment and enthusiasm about using the PACE Steps to Success so that it can work.”

The map shows the countries that people are from in 2021, with the largest group (38%) from the UK, followed by India (9%) and Australia (5%).

 

PACE Steps to Success Programme – in seven languages

The PACE Steps to Success Programme information pack and resources are available free of charge from the EAPC website at PACE Steps to Success Programme Information Pack and Tools –  in English, Finnish, Flemish, Polish, Italian, Dutch and French. For more information about the PACE project and publications see: PACE (EU FP7) – endoflifecare VUB

Benefits of free online education  

We therefore encourage all researchers to consider innovative ways to help clinicians across the world to engage in implementing research project outcomes.  Making the translation of study findings to improved care at the bedside from academic papers, even in respected journals, is challenging. Developing free online education may help to democratise access to education in the context of social and geographical restrictions linked to the Covid-19 pandemic and may be one way to ensure better care for everyone.

Acknowledgements

I wish to thank Yakubu Salifu and Bader Rimawi for help with facilitating the MOOC, along with Anthony Greenwood, Katherine Froggatt, Danni Collingridge Moore and the Information Systems Services team at Lancaster University for helping to produce it.

References

  1.  Hockley J, Froggatt K, Van den Block L. Honinx E, Onwuteaka-Philipsen B, Kylanen M, Szcerbinska K, Gambassi G, Pauteux S, Payne S, et al, on behalf of PACE A framework for cross-cultural development and implementation of complex interventions to improve palliative care in nursing homes: the PACE steps to success programme BMC Health Services Research 19, 745 (2019)
  2. Van den Block L. Honinx E, Pivodic L, Miranda R, Onwuteaka-Philipsen B, van Hout H, Pasman HRW, Oosterveld-Vlug M, Ten Koppel M, Piers R, Van Den Noortgate N, Engels Y, Vernooij-Dassen M, Hockley J, Froggatt K, Payne S, et al, for the PACE trial group. (2019). Evaluation of a palliative care program for nursing homes in 7 countries: the PACE Cluster-randomized clinical trial. JAMA Intern Med 11;180(2):1-10.

Links and resources


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Leadership Education in Palliative Care Award 2021 – Identifying and recognising leaders in palliative care

Left to right: Prof Christoph Ostgathe, Prof Raymond Voltz and Dr Gerrit Frerich.

On behalf of the European Association for Palliative Care (EAPC) and European Palliative Care Academy (EUPCA), Professor Christoph Ostgathe and Professor Raymond Voltz announce the ‘Award for Palliative Care Leadership Programmes 2021’. EUPCA coordinator, Dr Gerrit Frerich, explains more and encourages you to apply for this year’s award.

With the ongoing global demographic change, the need for palliative care is massively increasing. Managing change successfully requires leadership knowledge and skills. Future leaders are palliative care professionals who have the ability to effect positive change, not only in their country by advancing and improving the provision of palliative care, but also worldwide by networking and learning from others.

Given the importance of improving leadership education worldwide, we are delighted to announce the ‘Leadership Education in Palliative Care Award 2021’. This award acknowledges programmes where leadership is developed, recognises excellence, and promotes leadership as an integral and important part of palliative care. The award is presented jointly by the European Palliative Care Academy (EUPCA) and the European Association for Palliative Care (EAPC).

What defines a successful leadership programme?

We are seeking leadership capacity building programmes worldwide that strive to develop palliative care at a time when it is needed most. These initiatives could take place in your hospice, hospital, or other palliative care institution – anywhere in the world. An independent jury of internationally renowned experts from the EAPC and EUPCA will select the winner, who will receive the award at a ceremony during the 17th World Congress Online of the European Association for Palliative Care,

which will take place on 6 to 8 October 2021. A representative of the winning institution will receive registration to attend the three-day conference.

Coming soon

The need for quality leadership education has been recognised by the EAPC Leadership Task Force which plans to investigate the core leadership competencies in palliative care. The aim of this work is to aid the quality of international improvements in leadership education. Chaired by Professor Sheila Payne and Professor Raymond Voltz, approximately 200 experts worldwide will be surveyed as part of a Delphi study. First results will be presented at the next EAPC congress in 2022.

Leadership Award Winners in 2019

The second leadership award was presented at the 16th EAPC World Congress in Berlin in 2019 and awarded to: Steve Dewar, Westcott Group, and Jean Hindmarch, Hospice UK, for their Hospice Strategic Leadership Programme. This eight-day programme strengthened hospice leaders and gathered participants from 57 different UK hospices to bring about change.

Apply now for the 2021 Leadership Award

If you believe your institution or initiative fulfils the criteria and should be considered for this exciting award, we would love to receive your application for the 2021 Leadership Award. Deadline for applications: 31 May 2021.

Links

More about EUPCA …
The European Palliative Care Academy is a joint project of four European flagship institutions in Palliative Care. Since 2012, our EUPCA leadership course has enabled future leaders from 29 countries to advance Palliative Care. For information about this, and our soon to be launched International Master of Science, please visit www.eupca.eu


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