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.
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.
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.
Organisations
- University College London (Lead Research Organisation)
- Department of Health and Social Care (Co-funder)
- Zurich University of Applied Sciences (Collaboration)
- London School of Economics and Political Science (University of London) (Collaboration)
- Rare Dementia Support (Collaboration)
- University of Bergen (Collaboration)
- MARIE CURIE (Collaboration)
- University of Hull (Collaboration)
- The University of Texas at San Antonio (Collaboration)
- National Institute for Health Research (Collaboration)
- European Association for Palliative Care (EAPC) (Collaboration)
- Worldwide Hospice Palliative Care Alliance (Collaboration)
- Leiden University Medical Center (Collaboration)
- Dementia UK (Collaboration)
- YouGov (Collaboration)
- ALZHEIMER'S SOCIETY (Collaboration)
- KING'S COLLEGE LONDON (Collaboration)
- Marie Curie (Project Partner)
- King's College London (Project Partner)
Publications
Aker N
(2021)
Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life.
in BMC health services research
Armstrong M
(2022)
Trust and inclusion during the Covid-19 pandemic: Perspectives from Black and South Asian people living with dementia and their carers in the UK.
in International journal of geriatric psychiatry
Aworinde J
(2022)
How do person-centered outcome measures enable shared decision-making for people with dementia and family carers?-A systematic review.
in Alzheimer's & dementia (New York, N. Y.)
Aworinde J
(2024)
Co-design of the EMBED-Care Framework as an intervention to enhance shared decision-making for people affected by dementia and practitioners, comprising holistic assessment, linked with clinical decision support tools: A qualitative study.
in Health expectations : an international journal of public participation in health care and health policy
Coombes L
(2021)
Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review of recall period, response scale format, and administration modality.
in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation
Crawley S
(2023)
Grief in family carers of people living with dementia: A systematic review.
in International psychogeriatrics
Gillam J
(2022)
Implementation of eHealth to Support Assessment and Decision-making for Residents With Dementia in Long-term Care: Systematic Review.
in Journal of medical Internet research
Gillam, J
(2021)
Preprint: Implementation of eHealth to support assessment and decision-making for residents with dementia in long-term care: systematic review
in Journal of Medical Internet Research 23 April 2021
Gillam, J
(2022)
"Implementation of eHealth to Support Assessment and Decision-making for Residents With Dementia in Long-term Care: Systematic Review"
in Journal of Medical Internet Research.
Hodiamont F
(2021)
Culture in the spotlight-cultural adaptation and content validity of the integrated palliative care outcome scale for dementia: A cognitive interview study.
in Palliative medicine
Kupeli N
(2023)
Can cultivating self-compassion protect older aging adults against psychological maladjustment?
in International psychogeriatrics
Lapid MI
(2020)
Providing quality end-of-life care to older people in the era of COVID-19: perspectives from five countries.
in International psychogeriatrics
Moore KJ
(2020)
Supporting families in end-of-life care and bereavement in the COVID-19 era.
in International psychogeriatrics
Sampson EL
(2020)
Empowering Better End-of-Life Dementia Care (EMBED-Care): A mixed methods protocol to achieve integrated person-centred care across settings.
in International journal of geriatric psychiatry
Scher C
(2022)
Usefulness and acceptability of an animation to raise awareness to grief experienced by carers of individuals with dementia.
in Dementia (London, England)
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. In 2023 we held a parliamentary policy event at the House of Lords, attended by members of all-party parliamentar groups and key UK leaders in health and social care for older people. |
First Year Of Impact | 2021 |
Sector | Healthcare,Other |
Impact Types | Societal Policy & public services |
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 | Contribution to a national consultation/review |
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 | Palliative and end of life care UK Parliament POST |
Geographic Reach | National |
Policy Influence Type | Citation in other policy documents |
URL | https://researchbriefings.files.parliament.uk/documents/POST-PN-0675/POST-PN-0675.pdf |
Description | UK Parliamentary POST briefing on Palliative and End of Life care |
Geographic Reach | National |
Policy Influence Type | Citation in other policy documents |
Impact | Below publications cited in UK Parliamentary POST Yorganci, E. et al. (2022). Patterns of unplanned hospital admissions among people with dementia: from diagnosis to the end of life. Age and Ageing, Vol 51, afac098. Yorganci, E. et al. (2021). Quality indicators for dementia and older people nearing the end of life: A systematic review. Journal of the American Geriatrics Society, Vol 69, 3650-3660. |
URL | https://researchbriefings.files.parliament.uk/documents/POST-PN-0675/POST-PN-0675.pdf |
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 | 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 |
Impact | UK Research and Innovation (UKRI) are promoting the work of their COVID-19 research projects. They have selected our project ENDEMIC: Dementia and Decision Making During COVID-19, led by Dr Nathan Davies and Dr Nuriye Kupeli. This developed a freely available decision aid for carers of people living with dementia who developed COVID-19. It is going to be used in communications, including an e-mail to MPs, to show the real life impact UKRI funding has made. |
URL | https://www.ucl.ac.uk/epidemiology-health-care/endemic-dementia-and-decision-making-during-covid19 |
Description | ARC South London Involvement Fund |
Amount | £1,100 (GBP) |
Organisation | National Institute for Health Research |
Sector | Public |
Country | United Kingdom |
Start | 12/2022 |
End | 03/2023 |
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 | Empowering a Meaningful Life for All: Dementia Network Plus (EMPOWER) |
Amount | £1,748,414 (GBP) |
Funding ID | Grant recommended for funding, awaiting outcome of response to the financial queries raised and completion of contract. This is a consortium led by King's College London with colleagues from UCL. We will detail part funding received at contract stage.onc |
Organisation | United Kingdom Research and Innovation |
Sector | Public |
Country | United Kingdom |
Start | 03/2024 |
End | 03/2028 |
Description | Engagement |
Amount | £1,000 (GBP) |
Organisation | King's College London |
Sector | Academic/University |
Country | United Kingdom |
Start | 04/2022 |
End | 03/2023 |
Description | Faculty of Nursing, Midwifery and Palliative Care Seedcorn Fund (November 2023 to June 2024) |
Amount | £2,050 (GBP) |
Organisation | King's College London |
Sector | Academic/University |
Country | United Kingdom |
Start | 11/2023 |
End | 06/2024 |
Description | Grant to QMUL to host a National Dementia Policy Research Unit (DenPRU) |
Amount | £3,000,000 (GBP) |
Organisation | Queen Mary University of London |
Sector | Academic/University |
Country | United Kingdom |
Start | 01/2024 |
End | 12/2029 |
Description | NIHR Applied Research Collaborations Dementia Capacity Building (Post-doctoral training programme) |
Amount | £124,122 (GBP) |
Organisation | National Institute for Health Research |
Sector | Public |
Country | United Kingdom |
Start | 11/2022 |
End | 11/2024 |
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 | Policy Research Unit for palliative and end of life care |
Amount | £2,999,999 (GBP) |
Funding ID | NIHR206122 |
Organisation | National Institute for Health Research |
Sector | Public |
Country | United Kingdom |
Start | 01/2024 |
End | 12/2026 |
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 | Research for Patient Benefit |
Amount | £150,504 (GBP) |
Funding ID | NIHR206362 |
Organisation | National Institute for Health Research |
Sector | Public |
Country | United Kingdom |
Start | 08/2024 |
End | 10/2025 |
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 | Collaboration with KCL's Policy Institute, YouGov and the Alzheimer's Society to develop a public opinion survey and disseminate it |
Organisation | Alzheimer's Society |
Country | United Kingdom |
Sector | Charity/Non Profit |
PI Contribution | We provided the content and guided the development of the survey questions. Later on worked on preparation of the press release. |
Collaborator Contribution | Colleagues from the Policy Institute helped with the development of the questions. YouGov conducted the poll and analyses. We worked with the Alzheimer's Society for the press release. |
Impact | EMBED-Care commissioned YouGov to gain an insight into the public's understanding and perceptions around dementia, palliative and end-of-life care. Outcomes listed below: • Current and future level of need • Research and care funding and charity awareness • Dementia and palliative care • Priorities |
Start Year | 2022 |
Description | Collaboration with KCL's Policy Institute, YouGov and the Alzheimer's Society to develop a public opinion survey and disseminate it |
Organisation | King's College London |
Department | The Policy Institute |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | We provided the content and guided the development of the survey questions. Later on worked on preparation of the press release. |
Collaborator Contribution | Colleagues from the Policy Institute helped with the development of the questions. YouGov conducted the poll and analyses. We worked with the Alzheimer's Society for the press release. |
Impact | EMBED-Care commissioned YouGov to gain an insight into the public's understanding and perceptions around dementia, palliative and end-of-life care. Outcomes listed below: • Current and future level of need • Research and care funding and charity awareness • Dementia and palliative care • Priorities |
Start Year | 2022 |
Description | Collaboration with KCL's Policy Institute, YouGov and the Alzheimer's Society to develop a public opinion survey and disseminate it |
Organisation | YouGov |
Country | United Kingdom |
Sector | Charity/Non Profit |
PI Contribution | We provided the content and guided the development of the survey questions. Later on worked on preparation of the press release. |
Collaborator Contribution | Colleagues from the Policy Institute helped with the development of the questions. YouGov conducted the poll and analyses. We worked with the Alzheimer's Society for the press release. |
Impact | EMBED-Care commissioned YouGov to gain an insight into the public's understanding and perceptions around dementia, palliative and end-of-life care. Outcomes listed below: • Current and future level of need • Research and care funding and charity awareness • Dementia and palliative care • Priorities |
Start Year | 2022 |
Description | Collaboration with Marie Curie for dissemination of a paper |
Organisation | Marie Curie |
Country | United Kingdom |
Sector | Charity/Non Profit |
PI Contribution | We wrote a paper and worked on the press release |
Collaborator Contribution | Marie Curie team helped with the dissemination of the work |
Impact | The Carer publication ( has a readership of 45,000) - https://thecareruk.com/new-research-found-40-of-all-unplanned-hospital-admissions-for-people-living-with-dementia-happened-in-the-last-year-of-life/ E-hospice: https://ehospice.com/uk_posts/40-of-unplanned-hospital-admissions-for-people-living-with-dementia-are-in-the-last-year-of-life/ |
Start Year | 2022 |
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 | International Dementia/Palliative care Delphi Study Steering Committee |
Organisation | University of Texas |
Department | M. D. Anderson Cancer Center |
Country | United States |
Sector | Academic/University |
PI Contribution | Sitting on the International Dementia/ Palliative Care Delphi Steering Committee |
Collaborator Contribution | Led by Professor David Hui, Department of Palliative Care, Rehabilitation and Integrative Medicine, University of Texas MD Anderson Cancer Center, Houston, Texas, USA. The Delphi study builds on the groups systematic review on 'Referral criteria to specialist palliative care for patients with dementia' . |
Impact | Publication of systematic review in the Journal of the American Geriatrics Society. https://pubmed.ncbi.nlm.nih.gov/33655535/ |
Start Year | 2022 |
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 | Research consortium for palliative dementia care |
Organisation | Dementia UK |
Country | United Kingdom |
Sector | Charity/Non Profit |
PI Contribution | This collaboration builds on my international visit to Dr Jenny van der Steen, LUMC Netherlands. The collaboration has brought together national and international research partners in palliative care for people affected by dementia. The collaboration is pursing strengthening the integration of palliative care in health systems and services for adults with dementia. |
Collaborator Contribution | Hosted in Switzerland in 2022 an international workshop to bring together research partners to share research, identify research priorities and opportunities, and establish the research consortium. Hosting in Hull in 2023 an international workshop to bring together the research partners to plan research priorities and funding opportunities to build the research consortium and programme of collaborative research. |
Impact | Hosted in Switzerland in 2022 an international workshop to bring together research partners to share research, identify research priorities and opportunities, and establish the research consortium. Hosting in Hull in 2023 an international workshop to bring together the research partners to plan research priorities and funding opportunities to build the research consortium and programme of collaborative research. Translation and validation of the Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem) for use in clinical care. https://pos-pal.org/ |
Start Year | 2019 |
Description | Research consortium for palliative dementia care |
Organisation | Leiden University Medical Center |
Country | Netherlands |
Sector | Academic/University |
PI Contribution | This collaboration builds on my international visit to Dr Jenny van der Steen, LUMC Netherlands. The collaboration has brought together national and international research partners in palliative care for people affected by dementia. The collaboration is pursing strengthening the integration of palliative care in health systems and services for adults with dementia. |
Collaborator Contribution | Hosted in Switzerland in 2022 an international workshop to bring together research partners to share research, identify research priorities and opportunities, and establish the research consortium. Hosting in Hull in 2023 an international workshop to bring together the research partners to plan research priorities and funding opportunities to build the research consortium and programme of collaborative research. |
Impact | Hosted in Switzerland in 2022 an international workshop to bring together research partners to share research, identify research priorities and opportunities, and establish the research consortium. Hosting in Hull in 2023 an international workshop to bring together the research partners to plan research priorities and funding opportunities to build the research consortium and programme of collaborative research. Translation and validation of the Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem) for use in clinical care. https://pos-pal.org/ |
Start Year | 2019 |
Description | Research consortium for palliative dementia care |
Organisation | University of Bergen |
Country | Norway |
Sector | Academic/University |
PI Contribution | This collaboration builds on my international visit to Dr Jenny van der Steen, LUMC Netherlands. The collaboration has brought together national and international research partners in palliative care for people affected by dementia. The collaboration is pursing strengthening the integration of palliative care in health systems and services for adults with dementia. |
Collaborator Contribution | Hosted in Switzerland in 2022 an international workshop to bring together research partners to share research, identify research priorities and opportunities, and establish the research consortium. Hosting in Hull in 2023 an international workshop to bring together the research partners to plan research priorities and funding opportunities to build the research consortium and programme of collaborative research. |
Impact | Hosted in Switzerland in 2022 an international workshop to bring together research partners to share research, identify research priorities and opportunities, and establish the research consortium. Hosting in Hull in 2023 an international workshop to bring together the research partners to plan research priorities and funding opportunities to build the research consortium and programme of collaborative research. Translation and validation of the Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem) for use in clinical care. https://pos-pal.org/ |
Start Year | 2019 |
Description | Research consortium for palliative dementia care |
Organisation | University of Hull |
Country | United Kingdom |
Sector | Academic/University |
PI Contribution | This collaboration builds on my international visit to Dr Jenny van der Steen, LUMC Netherlands. The collaboration has brought together national and international research partners in palliative care for people affected by dementia. The collaboration is pursing strengthening the integration of palliative care in health systems and services for adults with dementia. |
Collaborator Contribution | Hosted in Switzerland in 2022 an international workshop to bring together research partners to share research, identify research priorities and opportunities, and establish the research consortium. Hosting in Hull in 2023 an international workshop to bring together the research partners to plan research priorities and funding opportunities to build the research consortium and programme of collaborative research. |
Impact | Hosted in Switzerland in 2022 an international workshop to bring together research partners to share research, identify research priorities and opportunities, and establish the research consortium. Hosting in Hull in 2023 an international workshop to bring together the research partners to plan research priorities and funding opportunities to build the research consortium and programme of collaborative research. Translation and validation of the Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem) for use in clinical care. https://pos-pal.org/ |
Start Year | 2019 |
Description | Research consortium for palliative dementia care |
Organisation | Zurich University of Applied Sciences |
Country | Switzerland |
Sector | Academic/University |
PI Contribution | This collaboration builds on my international visit to Dr Jenny van der Steen, LUMC Netherlands. The collaboration has brought together national and international research partners in palliative care for people affected by dementia. The collaboration is pursing strengthening the integration of palliative care in health systems and services for adults with dementia. |
Collaborator Contribution | Hosted in Switzerland in 2022 an international workshop to bring together research partners to share research, identify research priorities and opportunities, and establish the research consortium. Hosting in Hull in 2023 an international workshop to bring together the research partners to plan research priorities and funding opportunities to build the research consortium and programme of collaborative research. |
Impact | Hosted in Switzerland in 2022 an international workshop to bring together research partners to share research, identify research priorities and opportunities, and establish the research consortium. Hosting in Hull in 2023 an international workshop to bring together the research partners to plan research priorities and funding opportunities to build the research consortium and programme of collaborative research. Translation and validation of the Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem) for use in clinical care. https://pos-pal.org/ |
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 | "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 | 'EOLinPLACE: an international research project to reform the way dying places are classified and understood |
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. 'Capacity and processes of consent in dementia research: Empowering better end of life dementia care (EMBED-Care). Training session for study 'EOLinPLACE: an international research project to reform the way dying places are classified and understood', 28th April 2023, Faculty of Medicine, University of Coimbra, Coimbra, Portugal (virtual). Funder European Research Council. |
Year(s) Of Engagement Activity | 2023 |
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 | 'Nursing research matters: advancing palliative and end-of-life care webinar' National webinar by CNO England Office |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | 6th October 2022: 'Nursing research matters: advancing palliative and end-of-life care webinar', national webinar by CNO England Office, HEE and NIHR. Presented 'I want to live my life well and die peacefully when the time comes': Integrating palliative care into community healthcare for older adults with dementia. Over 200 attendees, practitioners (registered nurses) and researchers. |
Year(s) Of Engagement Activity | 2022 |
URL | https://www.eventbrite.co.uk/e/webinar-advancing-palliative-end-of-life-care-through-nurse-led-resea... |
Description | 'Nursing research matters: advancing palliative and end-of-life care webinar' National webinar by CNO England Office - Evans C |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | National webinar by CNO England Office, HEE and NIHR. Presented 'I want to live my life well and die peacefully when the time comes': Integrating palliative care into community healthcare for older adults with dementia. Over 200 attendees, practitioners (registered nurses) and researchers. |
Year(s) Of Engagement Activity | 2022 |
URL | https://www.eventbrite.co.uk/e/webinar-advancing-palliative-end-of-life-care-through-nurse-led-resea... |
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 | 13th Oct DEEP Bradford workshop: has been organised as an in-person event. |
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 | This event enabled feedback on the EMBED-Care Framework app from people living with dementia or those who are or have cared for a relative with a dementia diagnosis. This has helped to revise the app to improve the accessibility. |
Year(s) Of Engagement Activity | 2022 |
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 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 | 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 | 29th Sept codesign workshop: TA/JG invited HCPs, carers and PPI from previous groups, all original attendees. A 'late summer' EMBED newsletter will be circulated to HCPs and include an opportunity to attend the workshop. |
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 | This event enabled feedback on the EMBED-Care Framework app from professionals working with people living with dementia. This helped to revise the app to function. |
Year(s) Of Engagement Activity | 2022 |
Description | 40% of unplanned hospital admissions for people living with dementia are in the last year of life |
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 | 40% of unplanned hospital admissions for people living with dementia are in the last year of life - published in ehospice magazine |
Year(s) Of Engagement Activity | 2022 |
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 | ARC South London Newsletter article: Active Involvement in Research event discusses the impact of Covid-19 on involvement |
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 | ARC South London newsletter article 'Active Involvement in Research event discusses the impact of Covid-19 on involvement' reporting on online event where Catherine Evans and Janet Ward (PPI co-app) presented on EMBED-Care. |
Year(s) Of Engagement Activity | 2022 |
URL | https://arc-sl.nihr.ac.uk/news-insights/latest-news/active-involvement-research-event-discusses-impa... |
Description | ARC South London Newsletter article: Active Involvement in Research event discusses the impact of Covid-19 on involvement |
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 | ARC South London newsletter article 'Active Involvement in Research event discusses the impact of Covid-19 on involvement' reporting on online event where Catherine Evans and Janet Ward (PPI co-app) presented on EMBED-Care. |
Year(s) Of Engagement Activity | 2022 |
URL | https://arc-sl.nihr.ac.uk/news-insights/latest-news/active-involvement-research-event-discusses-impa... |
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 Disease International conference poster "How might patterns of unplanned hospital admissions among people with dementia change from diagnosis to the end of life?" |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Other audiences |
Results and Impact | Poster presentation at Alzheimer's Disease International conference. Titled "How might patterns of unplanned hospital admissions among people with dementia change from diagnosis to the end of life?". Authors: Emel Yorganci, Robert Stewart, Elizabeth L Sampson, Katherine E Sleeman |
Year(s) Of Engagement Activity | 2022 |
Description | Alzheimer's Disease International conference poster "How might patterns of unplanned hospital admissions among people with dementia change from diagnosis to 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 | Poster presentation at Alzheimer's Disease International conference. Titled "How might patterns of unplanned hospital admissions among people with dementia change from diagnosis to the end of life?". Authors: Emel Yorganci, Robert Stewart, Elizabeth L Sampson, Katherine E Sleeman |
Year(s) Of Engagement Activity | 2022 |
URL | https://www.alzint.org/what-we-do/adi-conference/adi-conference-2022/ |
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 | An intervention to enhance shared decision-making: Co-design with people living with dementia, family carers and practitioners |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Abstract accepted and projected to be given as an oral presentation, by Tofunmi Aworinde at the 33rd Alzheimer Europe Conference taking place in Helsinki on 17/10/2023 at 14:00-15:15. |
Year(s) Of Engagement Activity | 2023 |
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 | BGS Blog: Empowering better end-of-life care for people with dementia, by E Yorganci |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Empowering better end-of-life care for people with dementia blog in BGS by Emel Yorganci |
Year(s) Of Engagement Activity | 2022 |
URL | https://www.bgs.org.uk/blog/ |
Description | Blog - ehospice newsletter: Empowering Better End of Life Dementia Care (EMBED-Care) (11 Sept 2022)Ward, J, Evans, C, et al (2022) |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Other audiences |
Results and Impact | A blog with international reach to share a positive experience and to influence others. |
Year(s) Of Engagement Activity | 2022 |
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 | CE-S presented to HIN |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Findings from research project on integrated palliative care in care homes, including IPOS-Dem and the EMBED-Care Framework |
Year(s) Of Engagement Activity | 2022 |
Description | CES presented EMBED to practitioners |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Other audiences |
Results and Impact | Presentation on IPOS for dementia: it's development, results of research and audit work, and how it forms a component of the EMBED-Care Framework |
Year(s) Of Engagement Activity | 2022 |
URL | https://www.hospiceuk.org/innovation-hub/support-for-your-role/networks-communities/project-echo/res... |
Description | CES presented EMBED-Care and on panel discussion at Dementia and Palliative and End of Life Care Pathway Integration Workshop |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | Day 1: Palliative and End of Life Dementia Care presentation Day 2: Panel discussion |
Year(s) Of Engagement Activity | 2022 |
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 (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 | 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 | 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 | Citation in Age & Ageing Editorial |
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 | Citation and discussion of Yorganci E, et al, Patterns of unplanned hospital admissions among people with dementia: from diagnosis to the end of life. Age and Ageing, Volume 51, Issue 5, May 2022, in editorial by Vardy E, (2022). Patterns of unplanned hospital admissions in people with dementia. Age and Ageing, |
Year(s) Of Engagement Activity | 2022 |
URL | https://academic.oup.com/ageing/article/51/6/afac123/6588718?searchresult=1 |
Description | Critical care admissions for dementia patients increasing in last year of life - Nursing Times |
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 | Professional Practitioners |
Results and Impact | The largest website for nurses outside of the US, with over 10 million annual page views and over 5 million unique visitors (Jan - Dec 2023) |
Year(s) Of Engagement Activity | 2023 |
URL | https://www.nursingtimes.net/news/research-and-innovation/critical-care-admissions-for-dementia-pati... |
Description | Critical care admissions for people with dementia are increasing for those in their last year of life |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Other audiences |
Results and Impact | Critical care admissions for people with dementia are increasing for those in their last year of life |
Year(s) Of Engagement Activity | 2023 |
URL | https://www.maudsleybrc.nihr.ac.uk/posts/2023/september/critical-care-admissions-for-people-with-dem... |
Description | Critical care admissions for people with dementia are increasing for those in their last year of life (British Geriatrics Society Blogs ) |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Critical care admissions for people with dementia are increasing for those in their last year of life (British Geriatrics Society Blogs ) |
Year(s) Of Engagement Activity | 2023 |
URL | https://www.bgs.org.uk/blog/critical-care-admissions-for-people-with-dementia-are-increasing-in-the-... |
Description | Critical care unit admissions of people with dementia: Who is admitted and what happens afterwards? |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | European Psychiatric Association [EPA] Section of Epidemiology & Social Psychiatry is a biennial international conference. My presentation was part of a smaller symposium which focused on using large routine datasets for dementia research - it included presentations from five researchers. My presentation was the only one using critical care data linked with dementia |
Year(s) Of Engagement Activity | 2022 |
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 Friendly Hospital Charter Launch - Wales -ND invited to talk at the Wales dementia friendly hospital charter launch about EMBED |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Cwm Taf Morgannwg University Health Board launches the All Wales Dementia Friendly Hospital Charter - Wales presentation on End of Life Care / Palliative |
Year(s) Of Engagement Activity | 2022 |
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 Uk ECHO session; presentation on dementia and included embed-Care by ND |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Dementia UK/Hospice Uk ECHO session; presentation on dementia and included embed-Care by ND |
Year(s) Of Engagement Activity | 2022 |
URL | https://professionals.hospiceuk.org/what-we-offer/clinical-and-care-support/project-echo |
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 | Development of an implementation plan for an eHealth intervention for people with dementia in care homes: a co-design study. |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | . |
Year(s) Of Engagement Activity | 2022 |
Description | EAPC 2022 Poster Presentation - The acceptability and effectiveness of eHealth interventions to support assessment and decision making for people with dementia living in care homes: 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 | Tunnard I, Gillam J, Vickerstaff V, Harvey C, Davies N, Ellis-Smith C, & Evans CJ 'The acceptability and effectiveness of eHealth interventions to support assessment and decision making for people with dementia living in care homes: A systematic review' 12th Research Congress of the European Association for Palliative Care, 18th- 20th May, 2022 |
Year(s) Of Engagement Activity | 2022 |
URL | https://issuu.com/cicelysaundersinstitute/docs/csi_eapc_2022_summary.pptx |
Description | EAPC 2022 Poster Presentation - The acceptability and effectiveness of eHealth interventions to support assessment and decision making for people with dementia living in care homes: 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 | Tunnard I, Gillam J, Vickerstaff V, Harvey C, Davies N, Ellis-Smith C, & Evans CJ 'The acceptability and effectiveness of eHealth interventions to support assessment and decision making for people with dementia living in care homes: A systematic review' 12th Research Congress of the European Association for Palliative Care, 18th- 20th May, 2022 |
Year(s) Of Engagement Activity | 2022 |
URL | https://issuu.com/cicelysaundersinstitute/docs/csi_eapc_2022_summary.pptx |
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 Poster Presentation: Learning from experience: running the EMBED-Care cohort study with people with dementia and their carers during the COVID-19 pandemic. Pres. Crawley S, Kenten C, Kupeli N, Collier I, Sampson E |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | EAPC Poster Presentation: Learning from experience: running the EMBED-Care cohort study with people with dementia and their carers during the COVID-19 pandemic. Pres. Crawley S, Kenten C, Kupeli N, Collier I, Sampson E |
Year(s) Of Engagement Activity | 2022 |
URL | https://eapccongress.eu/2022/ |
Description | EAPC Poster: A feasibility study of a decision aid to support family carers of people with dementia. Vickerstaff V, Aker N, Rait G, Sampsom E, Davies N |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | EAPC Poster: A feasibility study of a decision aid to support family carers of people with dementia. Vickerstaff V, Aker N, Rait G, Sampsom E, Davies N |
Year(s) Of Engagement Activity | 2022 |
URL | https://eapccongress.eu/2022/ |
Description | EAPC Poster: Economic analysis of a decision aid for family carers of people with dementia: a feasibility study. Vickerstaff V, Aker N, Rait G, Sampsom E, Davies N |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | EAPC Poster: Economic analysis of a decision aid for family carers of people with dementia: a feasibility study. Vickerstaff V, Aker N, Rait G, Sampsom E, Davies N |
Year(s) Of Engagement Activity | 2022 |
URL | https://eapccongress.eu/2022/ |
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 |
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 | Dissemination of EMBED-Care research updates - 4 a year |
Year(s) Of Engagement Activity | 2022 |
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 | East London Foundation Trust Annual Research Conference |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | East London Foundation Trust Annual Research Conference |
Year(s) Of Engagement Activity | 2023 |
Description | Empowering better end of life dementia care: The EMBED-Care programme - ECHO Hub - Palliative, End of life care and Dementia ECHO Knowledge Network Training Day 2023 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Other audiences |
Results and Impact | Engaged with members of the public about dementia and dementia care |
Year(s) Of Engagement Activity | 2023 |
Description | Empowering better end of life dementia care: The EMBED-Care programme - North West London ICB Last Phase of Life Group |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Engaged with clinical staff and commisioners about published and ongoing work |
Year(s) Of Engagement Activity | 2023 |
Description | EuGMS Poster Presentation - Co-designing the process and requirements to use a person centred outcome measure and decision support tool to enhance shared decision-making in dementia care |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Abstract accepted as a poster. Aworinde, J, Ellis-Smith, C, Evans, CJ. Co-designing the process and requirements to use a person centred outcome measure and decision support tool to enhance shared decision-making in dementia care Background Person-Centred outcome measures (PCOMs) can promote better communication between patients and care professionals, enhance shared decision-making, and improve patient outcomes. However, research is needed to understand the process and requirements to use a PCOM to enhance shared decisionmaking with people living with dementia in their own homes and with family carers. Method Three co-design workshops were held with family carers and health and social care professionals. The number of participants in each workshop ranged from 8-38, including nurses, palliative care nurses and consultants, and dementia specialists. Findings from our systematic review on how PCOMs enhance shared decision-making in dementia care and patient and public involvement consultation informed the topic areas for the initial workshop. Rapid thematic analysis of facilitator notes between workshops informed the subsequent workshops. Reflexive thematic analysis was conducted after the final workshop. A workflow diagram was developed after the first two workshops to illustrate how the IPOSDem and clinical decision resource would enhance shared decision-making. Aim To co-design the process and requirements to use the Integrated Palliative Outcome Scale for Dementia (IPOS-Dem) and decision resource tools to enhance shared decision-making with people living with dementia at home, family carers and care professionals. Results The key process for using the IPOS-Dem and clinical decision resources to enhance shared decision making involves people with dementia and their family carer completing an assessment, discussing symptoms and concerns identified with a practitioner, discussing options for care and treatment, and agreeing on care goals, guided by clinical decision resources. Requirements for family carers to use the IPOS-Dem and clinical decision resources include short information and coaching sessions on the IPOS-Dem and clinical decision resources. Conclusion Using a PCOM and decision support tool to enhance shared decision-making is novel and could improve care for people with dementia at home. The next step is to conduct user testing to understand the experience of using the PCOM and decision resource tool. We will then identify additional requirements to use the intervention and strengthen it. |
Year(s) Of Engagement Activity | 2022 |
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 | Helping carers make decisions for loved ones with dementia. UKRI UK Research and Innovation article on ENDEMIC work (1 July 2022) - Kupeli N |
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 | Helping carers make decisions for loved ones with dementia in UKRI on ENDEMIC (EMBED-Care) decision aid/toolkit. |
Year(s) Of Engagement Activity | 2022 |
URL | https://medium.com/covid-19-stories-from-the-pandemic/helping-carers-make-decisions-for-loved-ones-w... |
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 | IPOS-Dem Presentation at Cicely Saunders Institute POS Days |
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 | 16.05.2023 - Presentation at POS workshop on IPOS-Dem, EMBED-Care and implementation |
Year(s) Of Engagement Activity | 2023 |
Description | Improving Dementia Care: Assessing National Progress and Working to Provide Meaningful and High-Quality Care - KS presented at Public Policy Exchange webinar - Sept 8th 2022 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Policymakers/politicians |
Results and Impact | Improving Dementia Care: Assessing National Progress and Working to Provide Meaningful and High-Quality Care - PPE webinar for policy people and practioners - chaired by Paul Edwards, Director of Clinical Services at Dementia UK. Speakers included Baroness Finlay of Llandaff, Baroness Ritchie of Downpatrick, and Morgan Griffith-David (Policy Manager at Alzheimer's Society). |
Year(s) Of Engagement Activity | 2022 |
URL | https://www.publicpolicyexchange.co.uk/event.php?eventUID=ME24-PPE |
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 | Interview on "Drive Time" show , voice of Islam radio |
Form Of Engagement Activity | A broadcast e.g. TV/radio/film/podcast (other than news/press) |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Public/other audiences |
Results and Impact | Raising awareness of end of life care in dementia in hard to reach groups |
Year(s) Of Engagement Activity | 2023 |
URL | https://soundcloud.com/voislam/drive-time-show-podcast-14-08-2022-jr-doc-strikes-major-diseases?utm_... |
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 | Juliet Gillam's abstract accepted for oral presentation at Alz Disease International conference in June 2022. Title 'Development of an implementation plan for an eHealth intervention for people with dementia in care homes: a co-design study'. |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Presentation about developing an implementation plan for the EMBED-Care framework |
Year(s) Of Engagement Activity | 2022 |
URL | https://www.alzint.org/what-we-do/adi-conference/adi-conference-2022/ |
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 | Launch of a Policy Brief in Parliament |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Policymakers/politicians |
Results and Impact | Launch of a Policy Brief "A Right to be Heard" in the House of Lords. Even attended by 50 Parliamentarians, and senior clinical and academic leaders across DHSC, Royal Colleges, NHS E, OHID. Briefing was cited in a House of Lords debate. |
Year(s) Of Engagement Activity | 2023 |
URL | https://www.kcl.ac.uk/nmpc/assets/a-right-to-be-heard-policy-brief.pdf |
Description | London Ambulance Regional CPD afternoon |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | a talk given to the London Ambulance Regional CPD afternoon |
Year(s) Of Engagement Activity | 2023 |
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 ARC South London event 'Active Involvement in Research' |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | 'Empowering better end of life dementia care: patient and public involvement during the Covid-19 pandemic' presentation by Catherine Evans; also Jane Ward. 'Active involvement in research' virtual event hosted by NIHR ARC South London, 29th June 2022 |
Year(s) Of Engagement Activity | 2022 |
URL | https://arc-sl.nihr.ac.uk/news-insights/latest-news/active-involvement-research-event-discusses-impa... |
Description | NIHR ARC South London event 'Active Involvement in Research' |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Patients, carers and/or patient groups |
Results and Impact | 'Active involvement in research' virtual event hosted by NIHR ARC South London, presentation on 'Empowering better end of life dementia care: patient and public involvement during Covid-19 pandemic', 29th June 2022 |
Year(s) Of Engagement Activity | 2022 |
Description | NIHR ARC South London news piece on eHealth interventions publication |
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 | NIHR Applied Research Collaboration South London news piece 'The acceptability and effectiveness of eHealth interventions to support assessment and decision-making for people with dementia living in care homes' |
Year(s) Of Engagement Activity | 2022 |
URL | https://arc-sl.nihr.ac.uk/news-insights/latest-news/acceptability-and-effectiveness-ehealth-interven... |
Description | NIHR ARC South London news piece on eHealth interventions publication |
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 | NIHR Applied Research Collaboration South London news piece 'The acceptability and effectiveness of eHealth interventions to support assessment and decision-making for people with dementia living in care homes' |
Year(s) Of Engagement Activity | 2022 |
URL | https://arc-sl.nihr.ac.uk/news-insights/latest-news/acceptability-and-effectiveness-ehealth-interven... |
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 | NIHR Northern Ireland Palliative and End-of-Life Research Partnership and the Palliative Care Research Forum 'Cross-sector Partnerships to build capacity for palliative care research' |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | 13th October 2022: 'Cross-sector Partnerships to build capacity for palliative care research'. regional webinar hosted by NIHR Northern Ireland Palliative and End-of-Life Research Partnership and the Palliative Care Research Forum for Northern Ireland. Presented 'Applying for NIHR funding' using the example of the EMBED-Care programme. Attendees over 150 practitioners and researchers in palliative care. |
Year(s) Of Engagement Activity | 2022 |
URL | https://www.eventbrite.ie/e/cross-sector-partnerships-to-build-capacity-for-palliative-care-research... |
Description | NIHR Northern Ireland Palliative and End-of-Life Research Partnership and the Palliative Care Research Forum 'Cross-sector Partnerships to build capacity for palliative care research' - Belfast presentation |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | 'Cross-sector Partnerships to build capacity for palliative care research'. regional webinar hosted by NIHR Northern Ireland Palliative and End-of-Life Research Partnership and the Palliative Care Research Forum for Northern Ireland. Presented 'Applying for NIHR funding' using the example of the EMBED-Care programme. |
Year(s) Of Engagement Activity | 2022 |
URL | https://www.eventbrite.ie/e/cross-sector-partnerships-to-build-capacity-for-palliative-care-research... |
Description | NMPC Notes August 2023 |
Form Of Engagement Activity | A magazine, newsletter or online publication |
Part Of Official Scheme? | No |
Geographic Reach | Local |
Primary Audience | Professional Practitioners |
Results and Impact | Photos and a brief summary of the EMBED-Care Teams activities at the July 2023 London Science Museum Lates was featured in the August 2023 edition of NMPC Notes. NMPC Notes is the monthly newsletter of the King's Faculty of Nursing Midwifery, and Palliative Care. |
Year(s) Of Engagement Activity | 2023 |
URL | https://theflorencenightingalefaculty.newsweaver.com/staffbulletin/1g0umbxb6771df5ho6vkij?email=true... |
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 | Neurology Academy: Palliative Care Masterclass - Identifying unmet needs |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Neurology Academy: Palliative Care Masterclass - Identifying unmet needs |
Year(s) Of Engagement Activity | 2023 |
Description | New Research Found 40% of All Unplanned Hospital Admissions for People Living With Dementia Happened in the Last Year of Life |
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 | Newspiece about a paper The carer which is available in print and online has a readership over 45,000 and frequently available in care homes |
Year(s) Of Engagement Activity | 2022 |
URL | https://thecareruk.com/new-research-found-40-of-all-unplanned-hospital-admissions-for-people-living-... |
Description | News piece on the NIHR ARC South London website |
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 | A description and photos of the EMBED-Care Team's activities at the July 2023 London Science Museum Lates program. |
Year(s) Of Engagement Activity | 2023 |
URL | https://arc-sl.nihr.ac.uk/news-insights/latest-news/arc-researchers-engage-young-people-science-muse... |
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 Live - Dementia and end of life care (Nuriye Kupeli) |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Policymakers/politicians |
Results and Impact | Invited speaker "Colleagues in conversation - Dementia and end of life care: the impact and challenges for research and clinical nursing" |
Year(s) Of Engagement Activity | 2023 |
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 | POS and IPOS-Dem Training days - developing and evaluating implementation of IPOS-Dem |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | Engaged with health and social care practitioners and researchers with interest in palliative outcome measurement |
Year(s) Of Engagement Activity | 2023 |
URL | https://neurologyacademy.org/events/course/palliative-care-masterclass-4 |
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 | Palliative, end of life and Dementia ECHO Network - Recognition of dying with dementia and outcome measures |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | Palliative, end of life and Dementia ECHO Network - Recognition of dying with dementia and outcome measures |
Year(s) Of Engagement Activity | 2023 |
Description | Patterns of unplanned hospital admissions among people with dementia |
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 | Patterns of unplanned hospital admissions among people with dementia |
Year(s) Of Engagement Activity | 2023 |
Description | Patterns of unplanned hospital admissions in people with dementia |
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 | Vardy E. Patterns of unplanned hospital admissions in people with dementia. Age and Ageing. 2022 Jun;51(6):afac123. |
Year(s) Of Engagement Activity | 2022 |
URL | https://arc-sl.nihr.ac.uk/news-insights/latest-news/unplanned-hospital-admissions-people-dementia-hi... |
Description | Patterns of unplanned hospital admissions in people with dementia, Editorial by Emma Vardy citing Yorganci E, et al in Age and Ageing, Volume 51, Issue 6, June 2022, afac123, |
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 | Helping carers make decisions for loved ones with dementia in UKRI on ENDEMIC (EMBED-Care) decision aid/toolkit. |
Year(s) Of Engagement Activity | 2022 |
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 | Poster presentation at International Psychogeriatrics Association Conference, July 2023 |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Professional Practitioners |
Results and Impact | Engaged researchers and social care practitioners with interest in psychogeriatrics, specifically around dementia care. |
Year(s) Of Engagement Activity | 2023 |
URL | https://www.ipa-online.org/news-and-issues/2023-lisbon-congress---june-29-july-2-2023 |
Description | Presentation to care home staff |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | 15.02.2023 - Sussex Project Echo - Caring for dementia residents at end of life. Presentation give by Dr Clare Ellis-Smith. |
Year(s) Of Engagement Activity | 2023 |
Description | Presentation to clinicians |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | 26.04.2023 - Palliative, End of Life and Dementia ECHO - Recognition of dying with dementia and outcome measures. Presentation done by Dr Clare Ellis-Smith. |
Year(s) Of Engagement Activity | 2023 |
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 | Project ECHO Sussex Hospices Care Home Knowledge Network - 'Assessing Residents with Dementia at end of life'. Clare Ellis -Smith |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Other audiences |
Results and Impact | 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 | QMUL Conference: Research & Innovation @ ELFT; Presentation on EMBED-Care by CK |
Form Of Engagement Activity | A talk or presentation |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Professional Practitioners |
Results and Impact | QMUL Conference: Research & Innovation @ ELFT; Presentation on EMBED-Care |
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 | Science Museum Lates |
Form Of Engagement Activity | Participation in an activity, workshop or similar |
Part Of Official Scheme? | No |
Geographic Reach | National |
Primary Audience | Other audiences |
Results and Impact | Engaged with members of the public about dementia and dementia care |
Year(s) Of Engagement Activity | 2023 |
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 | Summer 2023 - PATIENT AND PUBLIC INVOLVEMENT FOCUS CSI Newsletter |
Form Of Engagement Activity | A magazine, newsletter or online publication |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Other audiences |
Results and Impact | Summer 2023 - PATIENT AND PUBLIC INVOLVEMENT FOCUS CSI Newsletter - PPI member audience |
Year(s) Of Engagement Activity | 2023 |
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 Mental Wellbeing College Podcast - Dementia end of life care and carer experience (Nuriye Kupeli) |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | International |
Primary Audience | Public/other audiences |
Results and Impact | Discussing Dementia palliative care (in particular the EMBED-Care programme), including common myths on dementia and the carer experience. |
Year(s) Of Engagement Activity | 2023 |
URL | https://www.youtube.com/watch?v=lXBpQJrHNrI |
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 |
Description | Unplanned hospital admissions for people with dementia higher in the last year of life |
Form Of Engagement Activity | Engagement focused website, blog or social media channel |
Part Of Official Scheme? | No |
Geographic Reach | Regional |
Primary Audience | Professional Practitioners |
Results and Impact | Newspiece about a paper People involved in research in South London region found out about the new paper |
Year(s) Of Engagement Activity | 2022 |
URL | https://arc-sl.nihr.ac.uk/news-insights/latest-news/unplanned-hospital-admissions-people-dementia-hi... |