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

Lead Research Organisation: University College London
Department Name: Division of Psychiatry

Abstract

We will generate a step-change in how care is provided for people with dementia. We will spark public conversation on dying with dementia, engage the public in our work by combining art and science and develop a new tool to maximise quality of life (QoL) and meet individual needs, regardless of age or type of dementia. One in three of us will die with dementia. It is the commonest cause of death in the UK. By 2040, 220,000 people will die with dementia each year. Distressing symptoms like pain and agitation are common. Policymakers and managers lack solutions to improve delivery of holistic person-centred care and information to plan future services. Access to good care for people with dementia towards end of life is highly unequal.

First, we create a network of collaborators, clinicians, policy makers, patients and families, linking to the UK Dementia Research Institute. This network will aid our engagement and dissemination at all stages and provide a platform for our research. Our research comprises 6 projects (called workstreams, WS). We use these to build, develop and test a model of integrated palliative dementia care, meaning palliative care is a vital part of dementia care across services.

WS1-understanding policy and developing a programme framework. Palliative care aims to maximise QoL through careful assessment and person-centred care. We will review the literature to develop a framework of palliative dementia care. This helps us choose study outcomes and analyse data (WS2-4), and measure if our intervention makes a difference (WS5-6). We will review if it meets the needs of people affected by dementia, and how well it supports palliative dementia care, continuity of care and maximised comfort. We will build a case to inform policymakers what staff, skills and types of care are needed in the future.

WS2-understanding inequality, current and future population need. We will use data collected routinely as part of clinical care, linked across hospital and home to understand when, why and how often people move between care settings. Results will help plan services, direct policy and inform public opinion. Combined with WS1 data, we will project future need to build a case for better care.

WS3-unmet needs and care provision in dementia towards the end of life. We will follow people with dementia who may be nearing end of life and their carers for 9 months, checking them every 3 months for distressing symptoms, unmet health, psychological or social needs and services used. This will tailor our intervention in WS5 to what is important to the person and those close to them. We include people with young onset and prion dementias and their carers to understand these neglected groups.

WS4-bringing our findings together to design the intervention. We will review findings from WS1-3 to compile a decision-making matrix that helps patients, carers and health care workers match care needs to palliative treatments. We will combine this matrix with the Integrated Palliative Outcome for Dementia (IPOS-Dem) to support staff to identify health and social needs, and a tool to aid decision-making for staff and carers to provide the right care, at the right time in the right place. This will form the basis for our EMBED-Care intervention designed in WS5.

WS5-co-design of a new model of palliative dementia care. The intervention will empower staff and carers to assess and monitor needs and concerns, and support decision making to manage distressing symptoms by providing the right care. It will maximise comfort and bridge moves between settings, providing seamless care. It is person-centered and tailored to individual goals of care. We will develop training packages for staff, and work with a technology company to enable remote monitoring.

WS6-testing the new model of care. We will check how well this works, using paper and online system, across care homes and at home to ensure it is practical, feasible and useful.

Planned Impact

Our Network for Excellence in Palliative Dementia Care links all beneficiaries though our website, knowledge exchange events and public lectures now and in the future, and enables our leverage of a step-change in care and societal attitudes on dying with dementia.

People with dementia: Our programme on understanding and improving care to maximise comfort and quality of life, to the end of life, has potential impact now, and for the 220,000 people predicted to die with dementia and palliative care needs each year by 2040. People with dementia will be actively involved in the design of our new intervention, shaping the care they receive, which will prioritise comfort and individual goals of care to ensure the right services in the right place at the right time. People with young onset and rapidly progressive prion dementia will benefit from better understanding of their needs. We will work with Dementia Engagement and Empowerment Groups outside London, spread through urban and rural locations throughout the UK, and National CJD and young onset dementia support groups.

Families, friends and carers of people with dementia often experience significant distress and grief, before and after the person with dementia dies. Improving comfort and QoL for the person with dementia will help carers with these challenges. Our co-designed intervention involves carers, empowering them to report symptoms and unmet needs, providing a greater sense of control.

Young people (15-25): population projections show young people will be increasingly affected by dementia, as relatives or carers, or eventually patients themselves, but their attitudes are often overlooked. We will engage them as co-creators of the research engagement strategy, giving them a rewarding opportunity to work at the interface of science and art.

Policy influencers: we drive evidence-based policymaking with regular policy labs and knowledge exchange, informed though our academic work and YouGov poll. We will review health and social care policy levers, guidelines and workforce capability, and how these should be realigned to optimise dementia palliative care. We will generate projections of future need for policymakers and provide 3rd sector organisations with evidence to lobby for better care.

Health and social care staff: there is limited skilled workforce capacity in dementia care, and a need for more integrated working, bringing together social, primary, palliative care and old age psychiatry. Staff will be actively involved in intervention co-design, ensuring optimal feasibility and acceptability for implementation in their setting. We include a match funded PhD studentship targeted at practitioners e.g. social worker. We will address workforce and training implications, ensuring staff are supported. They will benefit from a new intervention to improve care, and learning and development opportunities through innovative teaching, i.e. Project-ECHO tele-mentoring, to reach a large audience.

Academics: we expand social science research by improving theoretical understanding of palliative dementia care. Our cohort study on unmet needs and service use, is original, building knowledge and producing one of the largest datasets available for sharing. Our work on young onset and prion dementias is the first of its kind. Our data linkage increases capacity and innovates methods in big data research. We add knowledge on implementation and engagement from the outset. Findings will be shared with academics through seminars, conferences, academic papers, blogs and social media.

Early and mid-career researchers will gain skills to drive impact now and in the future. They are co-applicants, who will lead workstreams and participate in a programme of skills development in public engagement, policy and the 3rd sector. They will be mentored by senior researchers and develop national and international links through the NEPDC. PhD studentships build academic capacity.

Publications

10 25 50
 
Description The EMBED-Care Dementia Summit took place in January 2020. It brought together leading charities in the fields of dementia and palliative care to discuss our policy engagement and opportunities to support each other. We produced the following statement for the charities to review. The intention is for this to be publicly supported by the charities on the EMBED-Care website: We are committed to raising awareness that dementia is a progressive life-limiting condition. We believe that people should be able to live well and die well with dementia. We call for equitable health and social care for people with dementia irrespective of prognosis or severity. This should include care and support that is driven by the principles of palliative care, an approach based on their physical, social, spiritual, psychological and emotional needs. We support the aims of the EMBED-Care programme to foster collaboration between dementia and palliative care expertise to improve care for people living and dying with dementia and those affected by dementia.
First Year Of Impact 2020
 
Description CLAHRC South London Project Adoption 
Organisation National Institute for Health Research
Department NIHR CLAHRC for South London
Country United Kingdom 
Sector Public 
PI Contribution Advancement of knowledge to improve services.
Collaborator Contribution NIHR Collaboration for Leadership in Applied Health Research and Care South London project adoption
Impact Increased visibility of project
Start Year 2019
 
Description EMBED-Care & UCL Rare Dementia Support 
Organisation Rare Dementia Support
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Advising Professor Sebastian Crutch and Ms Jill Walton on the development and evaluation of a programme to address grief among family carers accessing the rare dementia support group
Collaborator Contribution Jill Walton has provided expert advise to a workshop for Kirsten Moore's fellowship to develop an animation on carer pre-death grief.
Impact Knowledge building
Start Year 2019
 
Description 'EMBED-Care programme' at the International Conference on Palliative Dementia Care 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Dr Catherine Evans presenting the EMBED--Care programme at the International Conference on Palliative Dementia Care, Belfast.
Year(s) Of Engagement Activity 2019
URL https://10times.com/icpdc-belfast
 
Description AT Today 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Research grant award publicity
Year(s) Of Engagement Activity 2019
URL http://attoday.co.uk/multi-million-pound-research-grant-set-to-improve-care-for-people-with-dementia...
 
Description CJD Support Network Newsletter - July 2019 issue 28 page 6 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact To inform those with CJD and their families/carers and generate interest in user involvement
Year(s) Of Engagement Activity 2019
URL https://www.cjdsupport.net/images/pdf/newsletter/CJDSN_News_2019_v3.pdf
 
Description CRN ENRICH National Meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact To inform CRN ENRICH members about the EMBED-Care Programme. With the potential to engage with their care home networks later in the programme
Year(s) Of Engagement Activity 2019
 
Description Care Home Research Network (CHRN) Winter Newsletter 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact 100 words and photo for CHRN Winter Newsletter - updating current and upcoming research projects involving people with dementia in care homes.
Year(s) Of Engagement Activity 2020
 
Description Charity Today 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Research grant award publicity
Year(s) Of Engagement Activity 2019
URL https://www.charitytoday.co.uk/3-7m-research-grant-set-to-improve-care-for-people-with-dementia/
 
Description Dementia UK: Hospice Community of Practice 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Moore presenting ELPAS and EMBED to raise awareness of current research relating to dementia and palliative care among Admiral Nurses working in UK hospices
Year(s) Of Engagement Activity 2020
 
Description EAPC conference, Berlin 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Conference presentations, poster and flyer to build network for the EMBED-Care programme
Year(s) Of Engagement Activity 2019
URL http://46.101.254.192/
 
Description EAPC poster presentation: 'A logic model of the evidence from a systematic meta-review for integrated palliative dementia care to optimise quality of life for people with dementia nearing the end of life' 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Evans CJ, Aworinde J, Candy B, Mughal R, Anderson J, Harding R, Sampson E, on behalf of the EMBED-Care programme. 'A logic model of the evidence from a systematic meta-review for integrated palliative dementia care to optimise quality of life for people with dementia nearing the end of life' 11th World Research Congress of the European Association for Palliative Care, May 2020, Palermo, Italy
Year(s) Of Engagement Activity 2020
 
Description EMBED-Care Dementia Summit 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Third sector organisations
Results and Impact To begin policy engagement. The day brought together the UK's leading dementia and palliative care charities to identify their perspectives towards EMBED-Care's focus and opportunities to work together in the shorter and longer term to influence policy
Year(s) Of Engagement Activity 2020
 
Description EMBED-Care Newsletter Autumn 2019 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Study participants or study members
Results and Impact To inform stakeholders of programme progress and developments
Year(s) Of Engagement Activity 2019
 
Description EMBED-Care launch conference 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Conference to launch and build network for the EMBED-Care programme
Year(s) Of Engagement Activity 2019
 
Description EMBED-Care policy meeting 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Third sector organisations
Results and Impact 4 nation policy meeting
Year(s) Of Engagement Activity 2019
 
Description Improving End of Life Care for People with Dementia - PPI learned experience (Chris Roberts) and researcher-led (Nathan Davies and Clare Ellis-Smith) presentations 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Presentations to inform professionals with Nathan Davies and Clare Ellis-Smith presenting from EMBED-Care and Chris Roberts from EMBED's PPI group presenting as well
Year(s) Of Engagement Activity 2020
URL https://www.healthcareconferencesuk.co.uk/assets/conferences-and-masterclasses/conferences/2020/feb/...
 
Description Institute of Psychiatry teaching 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Session on dementia palliative care to old age psychiatrists from across south London
Year(s) Of Engagement Activity 2019
 
Description International focus group as a research expert on good end of life care in dementia run by Jenny van der Steen and Mayumi Nishimura, May 2019 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact • Meeting in Leiden research group from Leiden University led by Jenny van der Steen on 31/01/2019.
Year(s) Of Engagement Activity 2019
 
Description King's College London News 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Research grant award publicity
Year(s) Of Engagement Activity 2019
URL https://www.kcl.ac.uk/news/47m-research-grant-set-to-improve-care-for-people-with-dementia
 
Description Marie Curie Media Centre Press Release 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Media (as a channel to the public)
Results and Impact Research grant award publicity
Year(s) Of Engagement Activity 2019
URL https://www.mariecurie.org.uk/media/press-releases/4.7m-research-grant-set-to-improve-care-for-peopl...
 
Description National Prion Institute Open day 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Workshop on end of life care for people with prion diseases and their families.
Year(s) Of Engagement Activity 2019
 
Description Noclor Research Matters Newsletter Autumn 2019 page 12-13 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Research grant award publicity
Year(s) Of Engagement Activity 2019
URL https://www.noclor.nhs.uk/sites/default/files/Research%20Matters%2015%20Autumn%202019%20interactive....
 
Description Nursing Times 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Research grant award publicity
Year(s) Of Engagement Activity 2019
URL https://www.nursingtimes.net/clinical-archive/dementia/record-3-7m-research-grant-to-transform-palli...
 
Description Open Events Forum: Palliative and End of Life Care: Improving Provision to meet increasing demand 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact To inform stakeholders of the importance of a palliative approach to dementia care and to raise awareness of recent and current studies in this area
Year(s) Of Engagement Activity 2019
URL https://www.clahrc-eoe.nihr.ac.uk/event/palliative-end-of-life-care-improving-provision-to-meet-incr...
 
Description Outcome Measurement in Palliative and End of Life Care with POS Family of measures - POS workshop 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Presentation to professionals on how 'Improving care through POS', with IPOS-Dem as an example.
Year(s) Of Engagement Activity 2020
URL https://pos-pal.org/maix/courses-and-workshops.php
 
Description Palliative Care Cymru North Wales Caring for People with Dementia at the end of their lives 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Practice and commissioning workshop
Year(s) Of Engagement Activity 2019
 
Description Palliative Care Cymru South Wales Caring for People with Dementia at the end of their lives Prof Sampson 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Practice and commissioning workshop
Year(s) Of Engagement Activity 2019
 
Description Palliative care for people with dementia: current and future contexts - KHP Knowledge Exchange Seminar 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presentation to professionals and public on "Palliative care for people with dementia: current and future contexts" by Professor Liz Sampson
Year(s) Of Engagement Activity 2020
 
Description Person-centred Palliative Care - KHP Knowledge Exchange Seminar 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presentation to professionals and public on "Person-centered palliative care" for those with dementia by Dr Catherine Evans
Year(s) Of Engagement Activity 2020
 
Description UK Research and Innovation 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Research grant award publicity
Year(s) Of Engagement Activity 2019
URL https://gtr.ukri.org/projects?ref=ES/S010327/1