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

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Crawley S (2022) Grief in family carers of people living with dementia: A systematic review. in International psychogeriatrics

 
Description EMBED-Care circulates a newsletter three times a year to over 300 people on our mailing list. The newsletter covers updates on the development and progress of work streams, our public and policy engagement work, the five PhDs linked to EMBED-Care and, in line with the wider remit of EMBED-Care to build capacity, we also highlight connected dementia and palliative care research from UCL and KCL. The mailing list includes people living with dementia and family carers, those working in the care sector, third and voluntary sector representative, clinicians, academics, and policy makers. We are aware that our reach goes beyond our mailing list with the newsletter forwarded to recipients' colleagues. The EMBED-Care website has been updated and expanded to provide information about the programme and links to outputs as these become available: www.ucl.ac.uk/embed-care. All the team include the website link as part of their email signature and on outputs to increase awareness of EMBED-Care.
First Year Of Impact 2020
Sector Healthcare,Other
Impact Types Societal

 
Description Continued to have regular meetings with the PPI group with their lived experience impacting on the further development of EMBED-Care
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
 
Description DEEP Pathways Summary Report
Geographic Reach National 
Policy Influence Type Participation in a national consultation
Impact https://www.ucl.ac.uk/psychiatry/sites/psychiatry/files/embed-care_deep_summary_report_final_0.pdf
URL https://www.ucl.ac.uk/psychiatry/sites/psychiatry/files/embed-care_deep_summary_report_final_0.pdf
 
Guideline Title COVID-19 dementia care pathway
Description ENDEMIC Decision Aid Implemented in NHS England COVID-19 dementia care pathway
Geographic Reach National 
Policy Influence Type Citation in clinical guidelines
Impact This will be used across the NHS to guide support for people with dementia and their carers during COVID-19 pandemic
 
Description ENDEMIC Decision Aid used in domiciliary care
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact ENDEMIC Decision Aid is being used to support families by a domiciliary care organisation - Bluebird Care - based in Brighton
 
Description Impact of Covid-19 on people with dementia in BAME communities
Geographic Reach National 
Policy Influence Type Citation in other policy documents
Impact Department of Health and Social Care policy team invited updates on our dementia research looking at the impact of Covid-19 on people with dementia, particularly in black and minority ethnic groups.
 
Description UKRI central team has selected ENDEMIC to be used in communications, including an e-mail to MPs, to show the real life impact UKRI funding has made.
Geographic Reach National 
Policy Influence Type Citation in other policy documents
 
Description ENDEMIC: dEmeNtia and DEcision MakIng during Covid19
Amount £73,372 (GBP)
Funding ID ES/V003720/1 
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 04/2020 
End 09/2020
 
Description NIHR Palliative and End of Life Care Research Partnership
Amount £89,460 (GBP)
Funding ID NIHR135170 
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 02/2022 
End 01/2023
 
Description Rapid evaluation of the care home response to the need for palliative and end-of-life care during the COVID-19 pandemic: integration, communication and workforce resilience (CovPall_CareHome)
Amount £181,764 (GBP)
Organisation National Institute for Health Research 
Sector Public
Country United Kingdom
Start 01/2021 
End 12/2021
 
Description Supplemental Programme Grant Funding for EMBED-Care Programme
Amount £334,447 (GBP)
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 09/2021 
End 03/2022
 
Description Collaboration with Jenny van der Steen's team, Leiden University Medical Center, the Netherlands, 
Organisation Leiden University Medical Center
Country Netherlands 
Sector Academic/University 
PI Contribution EMBED-Care cohort study collaborating with Jenny van der Steen's team at Leiden University Medical Center, the Netherlands, involved extra items being added for COVID on patient and carer questionnaires to standardise information datasets to gain cross national comparative outcomes during COVID-19.
Collaborator Contribution Cohort study information gathered in the UK and in the Netherlands will allow for cross national comparisons over the COVID crisis.
Impact Ongoing.
Start Year 2020
 
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 European Association for Palliative Care (EAPC) international collaboration 
Organisation European Association for Palliative Care (EAPC)
Country Italy 
Sector Public 
PI Contribution EMBED-Care have worked with the EAPC to increase the reach and profile of the programme, through their membership of our International Steering Committee. Our profile at EAPC was facilitated by Julie Ling CEO with e.g. presentation on European funded studies and identifying ways to promote through EAPC.
Collaborator Contribution EMBED-Care have worked with the EAPC to increase the reach and profile of the programme, through their membership of our International Steering Committee. Our profile at EAPC was facilitated by Julie Ling CEO with e.g. presentation on European funded studies and identifying ways to promote through EAPC.
Impact EMBED-Care have worked with the EAPC to increase the reach and profile of the programme, through their membership of our International Steering Committee. Our profile at EAPC was facilitated by Julie Ling CEO with e.g. presentation on European funded studies and identifying ways to promote through EAPC.
Start Year 2019
 
Description Health Economics partnership 
Organisation London School of Economics and Political Science (University of London)
Department LSE Health and Social Care
Country United Kingdom 
Sector Academic/University 
PI Contribution Working jointly with LSE to inform health economics input into all work streams of the programme
Collaborator Contribution Expertise in health economics
Impact Partnership with Professor Martin Knapp at LSE to support development of health economics work within the EMBED-Care programme
Start Year 2020
 
Description Marie Curie Care 
Organisation Marie Curie
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution Work in developing policy in this area and ensuring results of research have real-world impact on policy. Preparation of policy briefings and further development of EMBED-Care policy strategy
Collaborator Contribution Policy expertise
Impact Policy note and briefings are in development
Start Year 2020
 
Description NIHR ARC 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 integrate health and social care for people with dementia and improve delivery of palliative care by generalist staff where people live at home and in care homes, and at points of transition in care, such as from home to hospital.
Collaborator Contribution NIHR Applied Research Collaboration South London project adoption to increase collaboration between core themes on Social Care and Palliative Care, and specifically core project on new models of palliative care for underserved groups.
Impact Increased visibility of project and collaboration across research studies in the NIHR ARC SL theme on palliative and end of life care, and specifically project on new models of palliative care for underserved groups
Start Year 2019
 
Description Worldwide Hospice Palliative Care Alliance (WHPCA) international collaboration 
Organisation Worldwide Hospice Palliative Care Alliance
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution EMBED-Care worked with WHPCA to increase reach and profile of the programme, through their membership of our International Steering Committee. Our profile was facilitated by Steven Connor, Executive Director, in identifying ways to promote through WHPCA.
Collaborator Contribution EMBED-Care worked with WHPCA to increase reach and profile of the programme, through their membership of our International Steering Committee. Our profile was facilitated by Steven Connor, Executive Director, in identifying ways to promote through WHPCA.
Impact EMBED-Care worked with WHPCA to increase reach and profile of the programme, through their membership of our International Steering Committee. Our profile was facilitated by Steven Connor, Executive Director, in identifying ways to promote through WHPCA.
Start Year 2019
 
Description 17th World Congress of the European Association for Palliative Care presentation: Using Structured, Person-Centred Measures for People with Dementia Unable to Self-Report to Identify and Meet Palliative Care Needs: Reflections from Empowering Better End of Life Dementia Care. 6-8th October 2021 (online) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact de Wolf_Linder, S., Kupeli, N., Crawley, S., Reisinger, M., Kenten, C., Gohles, E., Ellis-Smith, C., Davies, N., Moore, K., Sleeman, K., Schubert, M., Sampson, E.L., Murtaugh, F. and Evans, C.J presented on EMBED-Care: Using Structured, Person-Centred Measures for People with Dementia Unable to Self-Report to Identify and Meet Palliative Care Needs: Reflections from Empowering Better End of Life Dementia Care. 17th World Congress of the European Association for Palliative Care, 6-8th October 2021 (online)
Year(s) Of Engagement Activity 2021
URL https://www.eapc-2021.org/
 
Description "Blog post published on John's Campaign website: Helping Carers to Make Difficult Decisions If Their Loved One Has COVID-19" (ENDEMIC) 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact Wide dissemination of DA to relevant audiences
Year(s) Of Engagement Activity 2020
URL https://johnscampaign.org.uk/post/helping-carers-to-make-difficult-decisions-if-their-loved-one-has-...
 
Description 'Implementation in practice; a collaborative approach to engagement' Outcome Assessment and Complexity Collaborative (OACC), Hospice UK 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact 'Implementation in practice; a collaborative approach to engagement' Outcome Assessment and Complexity Collaborative (OACC), Hospice UK
Year(s) Of Engagement Activity 2021
 
Description 'Implementation of eHealth interventions to support assessment and decision making for residents with dementia in care homes: A systematic review' EAPC oral presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact 'Implementation of eHealth interventions to support assessment and decision making for residents with dementia in care homes: A systematic review ' Gillam J, Davis N, Aworinde J, Yorganci E, Anderson JA, Evans C. Oral presentation at the European Association of Palliative Care conference, October 2021
Year(s) Of Engagement Activity 2021
 
Description 'News' post published ENDEMIC decision aid on the National Dementia Action Alliance NDAA newsletter and on Twitter 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact Wide dissemination of DA to professional audiences
Year(s) Of Engagement Activity 2020
 
Description 'News' post published ENDEMIC decision aid on the National Dementia Action Alliance website: New support for carers when making difficult decisions for people with dementia and COVID-19 
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 Wide dissemination of DA to professional audiences
Year(s) Of Engagement Activity 2020
URL https://nationaldementiaaction.org.uk/news/19863/
 
Description 'Using person-centred outcome measures to enable shared decision-making and improve outcomes of care for people with dementia and their family carers: A systematic review' EAPC Poster Presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact 'Using person-centred outcome measures to enable shared decision-making and improve outcomes of care for people with dementia and their family carers: A systematic review' Jesutofunmi Aworinde, Clare Ellis-Smith, Juliet Gillam, Moïse Roche, Lucy Coombes, Emel Yorganci, Catherine J Evans. Poster presentation at the European Association of Palliative Care conference, October 2021
Year(s) Of Engagement Activity 2021
 
Description 17th World Congress of the European Association for Palliative Care Presentation: Predictors of Pre-death and Post Death Grief in Family Carers of People with Dementia. A Systematic Review. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Crawley, S., West, E., Kupeli, N., Moore, K. Predictors of Pre-death and Post Death Grief in Family Carers of People with Dementia. A Systematic Review. 17th World Congress of the European Association for Palliative Care, 6-8th October 2021 (online)
Year(s) Of Engagement Activity 2021
URL https://www.eapc-2021.org/
 
Description 17th World Congress of the European Association for Palliative Care presentation: EMBED-Care. Providing a Firm Base: A System-Based Logic Model of Integrated Palliative Dementia (the EMBED-Care Programme). 6-8th October 2021 (online) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Evans C. and Sampson E., Presented on EMBED-Care. Providing a Firm Base: A System-Based Logic Model of Integrated Palliative Dementia (the EMBED-Care Programme). 17th World Congress of the European Association for Palliative Care, 6-8th October 2021 (online)
Year(s) Of Engagement Activity 2021
URL https://www.eapc-2021.org/
 
Description 17th World Congress of the European Association for Palliative Care presentation: Patterns of Unplanned Hospital Admissions among People with Dementia: From Diagnosis to the End of Life. 6-8th October 2021 (online) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Yorganci, E., Stewart, R., Sampson, E. and Sleeman K presented Patterns of Unplanned Hospital Admissions among People with Dementia: From Diagnosis to the End of Life. 17th World Congress of the European Association for Palliative Care, 6-8th October 2021 (online)
Year(s) Of Engagement Activity 2021
URL https://www.eapc-2021.org/
 
Description 17th World Congress of the European Association of Palliative Care presentation: Improving care for people unable to self-report: the role of person-centered proxy-reported assessment measures. 6-8 October 2021 (online) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Details of session:PS 3 " Improving care for people unable to self-report: the role of person-centered proxy-reported assessment measures"

Day: Wednesday, 6th October 2021

Time: 11.00 am - 11.50 am CET

Presenters: S. de Wolf-Linder (N.Kupeli), C. Ellis-Smith, M. Schunk

Chairs: D. Parker, C. Ellis-Smith
Year(s) Of Engagement Activity 2021
URL https://www.eapc-2021.org/
 
Description 17th World Congress of the European Association for Palliative Care presentation: Understanding Palliative Care Needs of People with Frontotemporal Lobar Degeneration (FTLD); Systematic Review.  6-8th October 2021 (online) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Sisk, A.-R., Bruun, A., Mitchinson, L., Warren, J., Kupeli, N. and Sampson, E.L presented: Understanding Palliative Care Needs of People with Frontotemporal Lobar Degeneration (FTLD); Systematic Review. 17th World Congress of the European Association for Palliative Care, 6-8th October 2021 (online)
Year(s) Of Engagement Activity 2021
URL https://www.eapc-2021.org/
 
Description 1st annual conference of the International Neuropalliative Care Society, Bringing Neuropalliative Care into Practice: Lessons from an International Panel, November 4-6, 2021 - Dr Clare Ellis-Smith 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact 1st annual conference of the International Neuropalliative Care Society, Bringing Neuropalliative Care into Practice: Lessons from an International Panel, November 4-6, 2021
Focusing on the theme of Taking Flight, celebrating the new society and highlighting the emerging prominence of the field. The conference offered attendees the ability to learn from experts in the world of neuropalliative care, hear updates in practice patterns, review the state of the science in neuropalliative care, and network with hundreds of others who are interested in the field.
Year(s) Of Engagement Activity 2021
URL https://smrpcc.org.au/event/international-neuropalliative-care-society-1st-annual-meeting/
 
Description APM: Association for Palliative Medicine of Great Britain and Ireland publication of EMBED-Care Summer Newsletter series 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact APM: Association for Palliative Medicine of Great Britain and Ireland publication of EMBED-Care Newsletter series to engage and update primarily professional practitioners but also lay audience for EMBED-Care.
Year(s) Of Engagement Activity 2021
URL https://apmonline.org/embed-care-newsletter-6-summer-2021/
 
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 Academy of Medical Sciences' 'End of life and palliative care: Policy catalysis' workshop 
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 Defined a list of priorities for end of life care research; participated in a workshop describing how to improve evidence based practice; improving participating in research and dissemination of research
Year(s) Of Engagement Activity 2020
URL https://acmedsci.ac.uk/more/events/end-of-life-and-palliative-care-policy-workshop-
 
Description Alzheimer's Society newsletter: ENDEMIC Decision Aid 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Wide dissemination of DA to relevant audiences
Year(s) Of Engagement Activity 2020
URL https://www.alzheimers.org.uk/research/care-and-cure-magazine
 
Description Article published in Care Home Management magazine: Dementia carers supported with COVID-19 care decision guide (ENDEMIC) 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Industry/Business
Results and Impact Wide dissemination of DA to relevant audiences
Year(s) Of Engagement Activity 2020
URL https://chmonline.co.uk/dementia-carers-supported-with-covid-19-care-decision-guide/?utm_source=rss&...
 
Description Article published in The Carer magazine: New Support For Carers When Making Difficult Decisions For People With Dementia And COVID-19 (ENDEMIC) 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Wide dissemination of DA to relevant audiences
Year(s) Of Engagement Activity 2020
URL https://thecareruk.com/new-support-for-carers-when-making-difficult-decisions-for-people-with-dement...
 
Description Association of Voluntary Service Managers included ENDEMIC Decision Aid in their October newsletter 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Industry/Business
Results and Impact Wide dissemination of DA to relevant audiences
Year(s) Of Engagement Activity 2020
URL https://avsm.org.uk/
 
Description British Geriatrics Society Autumn meeting presentation - Empowering Better End of Life Dementia Care by Katherine Sleeman (26th Nov 20) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The BGS Autumn meeting covered the latest scientific research and the best clinical practice in care of older people. The conference covered core areas of interest to all specialists responsible for the health care of older people.
Year(s) Of Engagement Activity 2020
URL https://www.bgs.org.uk/events/autumn-meeting-2020
 
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 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 (NIHR Maudsley Biomedical Research Centre) - updating current and upcoming research projects involving people with dementia in care homes.
Year(s) Of Engagement Activity 2020
URL https://www.maudsleybrc.nihr.ac.uk/research/clinical-disorders/dementia/care-home-research-network/
 
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 Chatathon on dementia (ENDEMIC) 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Chatathon broadcast on dementia aimed at a wide audience of researchers, academics, clinicians, lay audience interested in dementia
Year(s) Of Engagement Activity 2020
URL https://chatathon.uk/
 
Description DEEP UK Network of Dementia Voices: DEEP GROUPS Taking Part - How can we improve palliative care and end of life Dementia Care? We want to know your views. 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact DEEP UK Network of Dementia Voices: DEEP GROUPS Taking Part - How can we improve palliative care and end of life Dementia Care? We want to know your views. Charlotte Kenten's brief on EMBED-Care's call for involvement.
Year(s) Of Engagement Activity 2021
URL https://www.dementiavoices.org.uk/deep-groups-news/how-can-we-improve-palliative-care-and-end-of-lif...
 
Description DEEP Working Group 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact People with dementia are happy to be contacted to take part in our studies and are taking part in 1 study
Year(s) Of Engagement Activity 2020
 
Description Dementia Researcher - a Network for Early Career Researchers (Nuriye Kupeli) 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Engagement focused network for early career researchers raising the profile of Empowering Better End of Life Dementia Care Programme (EMBED-Care)
Year(s) Of Engagement Activity 2020
URL https://www.dementiaresearcher.nihr.ac.uk/profile-dr-nuriye-kupeli/
 
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 Blog - How can palliative care engage policy makers? https://eapcnet.wordpress.com/2021/12/08/how-can-palliative-care-engage-policymakers-by-offering-a-route-to-health-and-social-care-integration/ - Katherine Sleeman 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Blog - https://eapcnet.wordpress.com/2021/12/08/how-can-palliative-care-engage-policymakers-by-offering-a-route-to-health-and-social-care-integration/ - Katherine Sleeman
Year(s) Of Engagement Activity 2021
URL https://eapcnet.wordpress.com/2021/12/08/how-can-palliative-care-engage-policymakers-by-offering-a-r...
 
Description EAPC Blog by Sophie Crawley 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Sophie Crawley presented EMBED-Care to the European Association of Palliative Care blog which is aimed at a mix of professional and lay audiences with a view to introduce the research programme focused on improving palliative and end-of-life care for people with all types of dementia in the UK.
Year(s) Of Engagement Activity 2021
URL https://eapcnet.wordpress.com/2021/04/14/empowering-better-end-of-life-dementia-care-embed-care-prog...
 
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 
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 The EMBED-Care Newsletter is disseminated 3 times/year - Spring, Summer and Autumn - to inform stakeholders of programme progress and developments.
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 EMBED-Care website 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact EMBED-Care website is designed to be the go-to engagement platform for information on the programme and to sign up for newsletters, further information or to get involved.
Year(s) Of Engagement Activity 2020
URL https://www.ucl.ac.uk/psychiatry/research/marie-curie-palliative-care-research-department/research/c...
 
Description ENDEMIC Blog for Interdem 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Wide dissemination of the ENDEMIC Decision Aid
Year(s) Of Engagement Activity 2020
URL http://interdem.org/?p=7395
 
Description ENDEMIC Blog for Marie Curie 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Promoting study
Year(s) Of Engagement Activity 2020
URL https://www.mariecurie.org.uk/blog/supporting-carers-dementia/277479
 
Description ENDEMIC Decision Aid Trending on Twitter 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact Wide dissemination of DA to relevant audiences
Year(s) Of Engagement Activity 2020
 
Description ENDEMIC Decision Aid featured in Marie Curie newsletter 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact Wide dissemination of DA to relevant audiences - patients, carers, patient groups, researchers, academics, clinicians interested in palliative care
Year(s) Of Engagement Activity 2020
URL https://comms-mariecurie.org.uk/1IUE-72JDW-33112B4F974D1132VFOFTO6D7C3B47AF2180CF/cr.aspx
 
Description ENDEMIC Decision Aid featured in UCL News 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact Wide dissemination of DA to relevant audiences in a large mainly academic network
Year(s) Of Engagement Activity 2020
URL https://www.ucl.ac.uk/news/2020/sep/guidance-developed-dementia-carers-when-dealing-covid-19-infecti...
 
Description ENDEMIC Decision Aid implemented into the new dementia COVID-19 care pathway by NHS England 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact New care pathway by NHS England - Dementia wellbeing in the Covid-19 pandemic
Year(s) Of Engagement Activity 2020
URL https://www.england.nhs.uk/wp-content/uploads/2020/09/C0747_Dementia-wellbeing-in-the-COVID-19-pande...
 
Description ENDEMIC Decision Aid shared as an End of Life care resource on SLaM intranet 
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 National dissemination of DA to professional audiences
Year(s) Of Engagement Activity 2020
 
Description ENDEMIC Decision Aid shared at the End of Life working party at SLaM 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Regional Dissemination of DA
Year(s) Of Engagement Activity 2020
 
Description ENDEMIC Decision aid listed as a resource on the Association for Palliative Medicine Website 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Wide dissemination of DA to professional audiences
Year(s) Of Engagement Activity 2020
URL https://apmonline.org/healthcare-professionals/
 
Description ENDEMIC Decision aid shared on SCIE (Social Care Institute for Excellence) 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Wide dissemination of the decision aid tool to Health and social care practitioners, educators, researchers and managers
Year(s) Of Engagement Activity 2020
URL https://www.scie-socialcareonline.org.uk/supporting-you-to-make-decisions-while-caring-for-someone-l...
 
Description ENDEMIC Decision aid shared with CHAIN network 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Informing Health and social care practitioners, educators, researchers and managers of the Decision Aid
Year(s) Of Engagement Activity 2020
URL https://www.chain-network.org.uk/
 
Description ENDEMIC Decision aid shared with In my own bed please group website (Centre for Evidence-Based Medicine) 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact Wide dissemination of DA to relevant audiences - aimed at researchers, academics and clinicians
Year(s) Of Engagement Activity 2020
URL https://www.cebm.net/covid-19/in-my-own-bed-please-staying-at-home-with-covid-19/
 
Description ENDEMIC Decision aid shared with the Old Age Psychiatry Faculty at the Royal College of Psychiatrists 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Regional dissemination of DA to professional audiences
Year(s) Of Engagement Activity 2020
 
Description ENDEMIC Podcast for NIHR Dementia Researcher/AS 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Wide dissemination of the Decision Aid to Researchers, academics, clinicians interested in dementia
Year(s) Of Engagement Activity 2020
URL https://www.dementiaresearcher.nihr.ac.uk/podcast-alzheimers-society-keeping-research-going-during-a...
 
Description ENDEMIC Press release 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact Promotion of the study
Year(s) Of Engagement Activity 2020
URL https://www.mariecurie.org.uk/media/press-releases/dementia-and-covid19-new-research/274788
 
Description ENDEMIC Press release by Marie Curie and hosted on the Marie Curie Media Centre 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact ENDEMIC Press release and wide dissemination of the Decision Aid to Researchers, academics, clinicians interested in dementia
Year(s) Of Engagement Activity 2020
URL https://www.mariecurie.org.uk/media/press-releases/new-support-for-carers-when-making-difficult-deci...
 
Description Featured in Marie Curie Newsletter: Lead on the end of life care section of the most recent Lancet Commission on dementia prevention, intervention, and care 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact Lancet Commission on dementia prevention, intervention, and care: Liz Sampson led on the end of life care section of the most recent Lancet Commission on dementia prevention, intervention, and care.
Year(s) Of Engagement Activity 2020
URL https://comms-mariecurie.org.uk/1IUE-72JDW-33112B4F974D1132VFOFTO6D7C3B47AF2180CF/cr.aspx
 
Description IPOS-Dem Implementation workshop 
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 The workshop was attended by 25 international colleagues who all work to develop the IPOS-Dem within their respective countries. Countries include Japan, Thailand, Switzerland, Italy, The Netherlands, Germany and the UK. The workshop is an opportunity to network and share learning around IPOS-Dem implementation and discuss how the work can be progressed.
Year(s) Of Engagement Activity 2020
 
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 Invited panellist for the Festival of Love and Loss 
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 Discussion of grief and loss in the context of dementia
Year(s) Of Engagement Activity 2020
URL https://goodgrieffest.com/
 
Description Invited presentation to the UK CJD Support Network 
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 Dissemination of ELPAS and EMBED studies
Year(s) Of Engagement Activity 2020
 
Description Invited speaker at the Rare Dementia Support Service Carers' Support Group Meeting 
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 Dissemination of ELPAS study findings
Year(s) Of Engagement Activity 2020
 
Description Invited speaker on ''Empowering Better End of Life Dementia Care (EMBED-Care) programme' Invited parallel session on European funded research programmes at international palliative care research conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact invited presentation on 'Empowering Better End of Life Dementia Care (EMBED-Care) programme' fin parallel session on European funded research programmes on palliative care, 11th World Research Congress of the European Association for Palliative Care, May 2020, Palermo, Italy (virtual)
Year(s) Of Engagement Activity 2020
 
Description Invited speaker on 'Empowering Better End of life Dementia Care (EMBED-Care) programme', NIHR BRC Care Home Research Network South London Conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Invited to speak about the EMBED Care programme of work
Year(s) Of Engagement Activity 2019
 
Description Invited speaker on 'Evaluating Methods for Optimal Integration in Palliative and Dementia Care; a system-based logic model for Empowering Better End of life Dementia Care (EMBED-Care)', international palliative care research conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact International invited conference presentation for parallel session on 'Integration of Specialist Palliative Care: organisational models of collaboration for optimal research', 11th World Research Congress of the European Association for Palliative Care, May 2020, Palermo, Italy (virtual)
Year(s) Of Engagement Activity 2020
 
Description Invited speaker on 'Palliative care for non-cancer patients with multi-morbidity and complexity' at Palliative, Supportive and Psycho-Oncology Care Conference, Japan 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Invited speaker presentation on 'Palliative care for non-cancer patients with multi-morbidity and complexity' at Palliative, Supportive and Psycho-Oncology joint conference, Japan
Year(s) Of Engagement Activity 2020
 
Description Invited speaker on 'Palliative care for people with dementia: current and future contexts', Knowledge Exchange Seminar for King's Health Partners Palliative Care Clinical Academic Group 
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 Invited speaker on 'Person-centred Palliative Dementia Care', Knowledge Exchange Seminar, King's Health Partners, Palliative Care Clinical Academic Group, King's College London. 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Invited presentation on 'Person-centred Palliative Dementia Care' for Knowledge Exchange Seminar with practitioners, researchers, policy makers and patients and public, run by , King's Health Partners, Palliative Care Clinical Academic Group, Cicely Saunders Institute King's College London
Year(s) Of Engagement Activity 2020
URL https://www.kingshealthpartners.org/clinical-excellence/1875-palliative-care
 
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 Lancet Commission on dementia prevention, intervention, and care: Liz Sampson led on the end of life care section of the most recent Lancet Commission on dementia prevention, intervention, and care. 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Liz Sampson led on the end of life care section of the most recent Lancet Commission on dementia prevention, intervention, and care. An update to the 2017 commission.
Year(s) Of Engagement Activity 2020
URL https://www.thelancet.com/commissions/dementia2020?utm_campaign=tldementia20&utm_source=twitter&utm_...
 
Description Louise Robinson, Regius Professor of Ageing, disseminated ENDEMIC decision aid to colleagues at Newcastle University 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Wide dissemination of DA to professional audiences
Year(s) Of Engagement Activity 2020
 
Description Main partners - Marie Curie, Alzheimer's Society, Dementia UK and UCL - shared ENDEMIC decision aid on their social media channels 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact Wide dissemination of DA to relevant audiences
Year(s) Of Engagement Activity 2020
 
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 Marie Curie disseminated ENDEMIC research to their Hospice Research leads and Research Nurses 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Wide dissemination of DA to relevant audiences
Year(s) Of Engagement Activity 2020
 
Description Marie Curie virtual conference - Covid-19 & Palliative and End of Life Care: Decision making in the context of COVID - ENDEMIC decision aid (Nuriye Kupeli and Nathan Davies) 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact Wide dissemination of the DA to relevant audiences including researchers, academics, clinicians interested in palliative care
Year(s) Of Engagement Activity 2020
URL https://www.mariecurie.org.uk/research/information-researchers/annual-research-conference
 
Description Medium.com blogpost - "Dementia and Health Inequalities: Can Big Data Help?" by Emel Yorganci 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact "Dementia and Health Inequalities: Can Big Data Help?" Blogpost by Emel Yorganci, working on her PhD within the EMBED-Care programme
Year(s) Of Engagement Activity 2020
URL https://medium.com/@emel.yorganci
 
Description NHS Yorkshire and the Humber Dementia and Older Peoples Mental Health Clinical Network shared ENDEMIC decision aid 
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 Wide dissemination of DA to relevant audiences including Researchers, academics, clinicians interested in dementia and ageing
Year(s) Of Engagement Activity 2020
URL http://www.yhscn.nhs.uk/mental-health-clinic/Dementia.php
 
Description NIHR ARC KSS presentation of Empowering Better End of Life Dementia Care (EMBED-Care) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact NIHR ARC KSS Living Well with Dementia annual event attended by researchers and practitioners within the Kent, Surrey and Sussex region
Year(s) Of Engagement Activity 2021
 
Description NIHR Enrich (Enabling Research in Care Homes) blog: ENDEMIC Decision Aid 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Wide dissemination of the DA to relevant audiences including Researchers, academics, clinicians interested in dementia
Year(s) Of Engagement Activity 2020
URL https://enrich.nihr.ac.uk/blogpost/supporting-families-with-decisions-during-covid-19/
 
Description NIHR Enrich blog - Enabling Research in Care Homes (ENDEMIC) 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Wide dissemination of ENDEMIC DA to relevant audiences - Researchers, academics, clinicians interested in dementia
Year(s) Of Engagement Activity 2020
URL https://enrich.nihr.ac.uk/blogpost/supporting-families-with-decisions-during-covid-19/
 
Description National Dementia Action Alliance event: Improving End of Life Care for People with Dementia and their Carers through the Empowering Better End of Life Dementia Care Programme (EMBED-Care) presentations (Nathan Davies/Clare Ellis-Smith) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Conference presentations to inform professionals with Nathan Davies and Clare Ellis-Smith presenting from EMBED-Care and with Chris Roberts from EMBED's PPI group presenting as well.
https://nationaldementiaaction.org.uk/events/19118/
Year(s) Of Engagement Activity 2020
URL https://www.healthcareconferencesuk.co.uk/assets/conferences-and-masterclasses/conferences/2020/feb/...
 
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 OLD AGE PSYCHIATRY FOR THE 21st CENTURY conference presentation - Empowering Better End of life Dementia Care: the EMBED-Care Programme - 16th September 2021 by Katherine Sleeman 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact OLD AGE PSYCHIATRY FOR THE 21st CENTURY conference presentation aimed at doctors and trainees working with older age. Empowering Better End of life Dementia Care: the EMBED-Care Programme - 16th September 2021 by Katherine Sleeman
Year(s) Of Engagement Activity 2021
 
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 Research Society March 2021 Newsletter - PCRS Student Representative Emel Yorganci 
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 Article featuring EMBED-Care's PhD student and her research.
Year(s) Of Engagement Activity 2021
URL https://pcrs.org.uk/wp-content/uploads/2021/03/Issue-47.-March-2021-PCRS-Newsletter.pdf
 
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 PhD work presented to the Economic and Social Research Council LISS-DTP cohort - 10th December 2021 - Emel Yorganci 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Supporters
Results and Impact • PhD work presented to the Economic and Social Research Council LISS-DTP cohort - 10th December 2021 - Emel Yorganci
Year(s) Of Engagement Activity 2021
 
Description Piece on EAPC attendance in the PCRS Newsletter - https://pcrs.org.uk/wp-content/uploads/2021/11/Issue-50-November-2021-PCRS-Newsletter.pdf - Emel Yorganci 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact Palliative Care Research Society newsletter - Piece on EAPC attendance in the PCRS Newsletter - https://pcrs.org.uk/wp-content/uploads/2021/11/Issue-50-November-2021-PCRS-Newsletter.pdf - Emel Yorganci
Year(s) Of Engagement Activity 2021
URL https://pcrs.org.uk/wp-content/uploads/2021/11/Issue-50-November-2021-PCRS-Newsletter.pdf
 
Description Plenary speaker on 'Empowering Better End of life Care programme (EMBED-Care) at the International Conference on Palliative Dementia Care, Northern Ireland Hospices 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
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 Plenary speaker on 'Palliative care for people with dementia and multi-morbidity: Empowering Better End of Life Dementia Care (EMBED-Care)' 
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. 'Palliative care for people with dementia and multi-morbidity: Empowering Better End of Life Dementia Care (EMBED-Care)', Joint Meeting for Palliative, Supportive and Psycho-Oncology Care 2020, 19th June 2020, Kobe Japan, virtual meeting
Year(s) Of Engagement Activity 2020
 
Description Plenary speaker on 'Reality of evidence based practice in palliative care' for European Geriatric Medicine Society International Congress 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Plenary speaker on 'Reality of evidence based practice in palliative care' at European Geriatric Medicine Society International Congress, Krakow, Poland.
Year(s) Of Engagement Activity 2019
URL https://www.eugms.org/fileadmin/user_upload/EuGMS_2019_-_FINAL_TIMETABLE.pdf
 
Description Presentation to the Dementia UK Hospice Community of Practice 
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 Dissemination of ELPAS and EMBED studies
Year(s) Of Engagement Activity 2020
 
Description Presented to Department of Health and Social Care's (England) end of life and dementia teams - Katherine Sleeman (9th September 2021) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact • Work presented to the Department of Health and Social Care's (England) end of life and dementia teams - 9th September 2021
Year(s) Of Engagement Activity 2021
 
Description Project ECHO Sussex Hospices Care Home Knowledge Network - 'Assessing Residents with Dementia at end of life' 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Other audiences
Results and Impact 13th Jan 2022 Project ECHO Sussex Hospices Care Home Knowledge Network - 'Assessing Residents with Dementia at end of life'. About 15 care home staff present and about 5 Project ECHO staff present
Year(s) Of Engagement Activity 2022
URL https://professionals.hospiceuk.org/what-we-offer/clinical-and-care-support/project-echo
 
Description Royal College of Psychiatrists - Liaison Psychiatry and Clinical Ethics in COVID-19: faculty of Liaison Psychiatry webinar 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Webinar for clinicians on liaison psychiatry and clinical ethics in COVID-19
Year(s) Of Engagement Activity 2020
 
Description Royal Society of Medicine online seminar - You, me and PPE: The challenges of communicating in lockdown 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact RSM seminar on the challenges of communicating in lockdown for clinical staff
Year(s) Of Engagement Activity 2020
 
Description Social Care Institute for Excellence included the ENDEMIC Decision aid guide as a database listing: Supporting you to make decisions while caring for someone living with dementia during Coronavirus (COVID19) and beyond 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Wide dissemination of DA to professional audiences
Year(s) Of Engagement Activity 2020
URL https://www.scie-socialcareonline.org.uk/supporting-you-to-make-decisions-while-caring-for-someone-l...
 
Description The Global Alliance for the Rights of Older People - Alzheimer's Disease International (ADI) Webinar: Dementia care & Palliative care: during and beyond the COVID-19 pandemic 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact The Global Alliance for the Rights of Older People hosted the Alzheimer's Disease International (ADI) Webinar on Dementia care & Palliative care during and beyond the COVID-19 pandemic
Year(s) Of Engagement Activity 2020
 
Description The Imperial College Healthcare NHS Trust has circulated the ENDEMIC decision aid to their consultants 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Wide dissemination of DA to professional audiences
Year(s) Of Engagement Activity 2020
 
Description The Psych PhD Pathway - Open your Mind blogpost - "Dementia and Health Inequalities: Can Big Data Help?" by Emel Yorganci 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact "Dementia and Health Inequalities: Can Big Data Help?" Blogpost by Emel Yorganci, working on her PhD within the EMBED-Care programme
Year(s) Of Engagement Activity 2020
URL https://thepsychphdpathway.com/2020/07/27/dementia-and-health-inequalities/
 
Description Trending on Twitter: EAPC Tweet on Sophie Crawley's blog 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Trending on Twitter EAPC Tweet to promote Sophie Crawley's blog on EMBED-Care among professionals and interested lay audiences
Year(s) Of Engagement Activity 2021
URL https://mobile.twitter.com/EAPCvzw/status/1382242357383352326
 
Description UK Dementia Research Institute - Dementia Care Research Summit 2020 - Live stream: Celebrating successes in dementia care research 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact UK Dementia Care Research Summit - sessions and workshops for dementia researchers aimed at achievement collaboration and innovation
Year(s) Of Engagement Activity 2020
URL https://ukdri.ac.uk/events/dementia-care-research-summit-2020-live-stream
 
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