EMBED-Care Framework
Research type
Research Study
Full title
EMBED-Care (Empowering Better End of Life Dementia Care) Framework study
IRAS ID
305596
Contact name
Elizabeth Sampson
Contact email
Sponsor organisation
University College London
ISRCTN Number
ISRCTN16231169
Clinicaltrials.gov Identifier
Z6364106 2022 05 42, UCL data protection reference
Duration of Study in the UK
5 years, 11 months, 31 days
Research summary
One in three of us will die with dementia. It is the commonest cause of death in the UK. We currently lack solutions to improve the delivery of person-centred care and information to plan future services for end-of-life care. Palliative care is a vital part of dementia care across health and social care services, regardless of age or dementia type.
EMBED-Care comprises 6 linked work streams (WS). WS1-5 have been used to build and develop a new framework, the EMBED-Care Framework, for palliative dementia care.
WS1 comprised a literature review and WS2 uses existing anonymised clinical data to understand the movement of people with dementia between care settings. In WS3 people with dementia and carers are studied for 12 months to understand symptoms and unmet needs. WS4 has utilised these findings to develop a matrix that maps palliative treatments and interventions to needs. The EMBED-Care Framework is informed by the matrix and has been co-designed with people with dementia, carers, and health and social care professionals in WS5.
The EMBED-Care Framework uses a questionnaire to assess and monitor problems such as pain or low mood. It also aims to identify concerns of relatives or friends. It will support users to make decisions about care using flow charts to manage common symptoms. The framework is delivered through an app, and includes a manual, training (in-person and video), and support (online and face-to-face).In WS6 we will assess whether the framework is used in the way it is intended. We will explore whether training and support facilitates its use. We will also explore whether it is possible and acceptable for all users to use the framework. We will use this information to refine the framework. Finally, we will determine the best methods for a future larger scale study.
Lay summary of study results: Why we did this study:
Dementia is a condition that affects the brain and can make it harder for people to think, speak, understand, or carry out everyday activities. As dementia gets worse, people may not always be able to explain how they feel. This can make it difficult for families and healthcare professionals to make decisions about care that reflect the person’s wishes and needs.
Palliative care is an approach that supports people living with life-limiting conditions. It focuses on the person and what matters most to them. This means that their wishes help guide the care they receive, and any distressing symptoms are treated quickly to improve comfort and quality of life. People with dementia can benefit from palliative care at any stage of the condition, not just at the end of life.
The EMBED-Care Framework is a new, co-designed way of working designed to make it easier for people with dementia to get palliative care when they need it. It involves:
• A questionnaire to assess physical, mental, and social wellbeing
• Decision-support tools to help staff and families feel more confident in managing needs
• Resources to help staff and families use the framework in day-to-day care
The intention of the EMBED-Care Framework is to empower people with dementia, their families, and practitioners to work together to assess, monitor, and plan care that is informed by the wishes and needs of the person.
In this study, we aimed to find out how the EMBED-Care Framework may work to improve care and benefit people with dementia, family carers and staff; and understand how it should be used into day-to-day care.How we involved people with lived experience of dementia:
The EMBED-Care programme worked with people with lived experience from the outset and in every phase of the programme. This was achieved through a dedicated Patient and Public involvement Study Reference Panel comprising members with dementia and those with carer experience. The panel informed key decisions pertaining to study conduct, design of study materials, and data collection. People with lived experience were involved in co-designing the EMBED-Care Framework.What we did:
We carried out a feasibility study in two community healthcare teams and two care homes (long-term care facilities) from November 2023 to October 2024.Who took part:
Twenty-six people with dementia, 25 family carers, and 40 staff (care home workers or community practitioners).What was involved:
Staff used the framework for six months with people with dementia and family carers. People with dementia and their family carers took part in the study for 12 weeks. We collected information using interviews, focus groups, observations, and questionnaires, and analysed the data to see what worked well and what could be improved.What we found:
1. Empowerment
The framework encouraged holistic care by looking beyond physical health to include mental health, social wellbeing, and overall quality of life. This supported identifying individuals’ priorities and better care planning.The framework gave less experienced staff confidence by providing clear guidance and helping them build skills in palliative dementia care. Families in community settings felt empowered to report and manage care needs, including palliative needs. This reduced anxiety about the future and gave them a sense of control. Families in care homes saw the potential benefits but were less involved in using the framework.
2. Communication
Families and staff valued how the questions guided meaningful conversations about health and care. The framework improved communication in community teams by providing structured assessments and shared documentation. This supported discussions about people’s priorities and guided care decisions.3. Streamlining
Embedding the framework into existing care processes was key. In community teams, this meant aligning the app with team responsibilities and care processes. In care homes, duplication of existing paperwork and limited time made it harder to use.
Staff found the framework and the app useful and easy to use. However, staff suggested it would work best if the app was integrated with existing electronic health records. Staff also highlighted the need for support from managers to use the framework consistently in care.Conclusion
The EMBED-Care Framework has the potential to improve care for people with dementia living in their own homes and in care homes by:
• Empowering staff and families to feel more confident in identifying needs and working together to plan and manage needs that are most important to the person with dementia.
• Supporting holistic assessment of needs and priorities
• Strengthening communication between people with dementia, family carers and staff.
The framework was more acceptable and useful in community teams, where it supported structured discussions and care planning. In care homes, challenges such as duplicated paperwork, time pressures, and less family involvement lessened its impact.Next steps:
Further work is needed to better understand how the EMBED-Care Framework should be integrated into existing care systems. Further work is also needed to understand how family carers of residents in care homes can be more involved in using the EMBED-Care Framework.Funding:
This study was funded by the ESRC and NIHR.Acknowledgements:
We would like to thank all the participants for the time they gave and contributions they made in participating in this study.Find out more:
Visit the Dementia Journeys website (https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fdementia-journeys.com%2F&data=05%7C02%7Cqueensquare.rec%40hra.nhs.uk%7Ce080f251092d4651e2bf08de0d62e408%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638962915550687367%7CUnknown%7CTWFpbGZsb3d8eyJFbXB0eU1hcGkiOnRydWUsIlYiOiIwLjAuMDAwMCIsIlAiOiJXaW4zMiIsIkFOIjoiTWFpbCIsIldUIjoyfQ%3D%3D%7C0%7C%7C%7C&sdata=frsmLOJPg0Jrmgcbi16E0U8OyELQ9nApr6hGvkisLZo%3D&reserved=0 where you can learn about the lived experiences of carers of people with dementia. You can also find links to publications from the EMBED-Care Programme and all the EMBED-Care Framework resources.REC name
London - Queen Square Research Ethics Committee
REC reference
23/LO/0055
Date of REC Opinion
10 Feb 2023
REC opinion
Further Information Favourable Opinion