EMBED-Care Work Streams

Work stream 1 will synthesise health and social care evidence on palliative care for people with dementia towards the end of life, and review policy on the priorities for palliative care to understand the context, processes and components of palliative care for people with dementia, evidence of benefit and levers for change. The findings will inform a system-based logic model on palliative care for people with dementia. The model will underpin the EMBED-care programme and be developed and refined across the programme.

Work Stream 1 is led by Prof Catherine Evans

WS2 adds to our knowledge about how people with dementia use health services towards the end of their lives. This workstream takes a societal approach, exploring health inequalities experienced by people with dementia at a population level. We are using large data sets of routinely collected information about people’s characteristics, the areas they live in, their health, the services they access and receive, and information about their death.

Our systematic review of the available literature identified quality indicators for older individuals and those with dementia approaching the end of life and examined the scientific evidence underlying these quality indicators. 

Using a large data set we described the frequency of unplanned hospital admissions among people diagnosed with dementia from diagnosis until death, and the use of Critical Care Units among people with dementia.

Previous research has shown that some characteristics of people, for example their other health conditions such as depression or socioeconomic factors, might influence their interactions with the health services. We are now examining how health service use differs for different groups of people with dementia over time, as they approach the end of their life. Ultimately this knowledge will provide information to help improve care for future populations of people with dementia who are approaching the end of life.

Work Stream 2 is led by Prof Katherine Sleeman

Previous research suggests that people living with dementia who experience an unplanned or emergency admission to hospital are more likely to have unmet care needs. Unplanned admission to hospital can be distressing for both people living with dementia and their carers. A palliative care approach focusing on needs may be beneficial.

Workstream 3 will explore why care needs of people living with dementia and their carers are not being met. We will look at physical, psychological, social and spiritual needs of people living with dementia and their carers. We will use this information to look at the links between needs and quality of life, transitions between care settings as they happen and carer experiences. To do this we will work with hospitals to identify and recruit people living with dementia following an unplanned hospital admission. People living with dementia and their carers will be invited to take part once the person living with dementia has left the hospital and returned to their place of residence in the community. We will complete a number of assessments with the person living with dementia and their carers to get a better understanding of their needs. We will do these every two months for 12 months or until death. This will help us to improve our understanding of needs as they change including carers needs during bereavement. We will use this information to develop a model of care designed to address needs and improve quality of life for the person living with dementia and their carers. This model of care will be designed to ensure that the person living with dementia receives the appropriate care at their place of residence, where possible and that their carers are well supported throughout the caring role and into bereavement.

As part of this study we will also work with the MRC Prion Unit to explore the unmet needs of people living with prion diseases and their carers. Prion diseases are known to be rapidly progressing neurological diseases and the time frame to address needs and increase quality of life is short. People diagnosed with a prion disease and their carers will be assessed every four to eight weeks for 12 months or until death. We will also consider the unmet needs of people with Young Onset Dementia through one of EMBED-Care’s PhDs. This will focus on the unmet needs of people with Frontotemporal Dementia. We will use this information to inform future models of care.

Work Stream 3 is led by Dr Nuriye Kupeli

Work Stream 4 will bring together the findings from Work Streams 1-3 to help develop our new intervention. To do this we will try to using these findings to answer a number of questions:

1: What are the key unmet palliative care needs in people with dementia and their carers?

2: What are the national and international policy responses to meet these needs?

3: How strong is the existing research evidence on strategies to address unmet needs?

4: What resources are needed to put these strategies in place?

We will bring together the findings from Work Streams 1-3 organising and combining our data to see the unmet dementia palliative care needs. Often research using randomised controlled trials and meta-analysis evidence are regarded as the gold standard. However, these tend not to include other factors such as context, policy, resources and how these work together to either help or hinder how something works in practice. We will consider how this works for different people (including those with young onset and prion dementias) and highlight the gaps that still remain and will need further research.

Once our data has been combined, we will run focus groups with key people to provide a ‘reality check’ before using this to develop the intervention. We will conduct three separate focus groups with people with dementia, carers and health and social care practitioners who will be asked to comment on whether this will work on the setting e.g. care home that they know about. We will also thing about whether this can be used in other settings. Where new issues are raised, we will look at our own findings and the existing literature and decide whether these are important and should be included. The matrix (table) will be used to develop the intervention in Work Stream 5. 

Work Stream 4 is led by Dr Kirsten Moore

The aim of WS5 was the co-design of a new framework of palliative dementia care. We worked closely with people with dementia, carers and people who work in health and social care to develop the framework that helps staff and carers to assess and monitor needs and concerns about a person with dementia and support decision making to manage distressing symptoms by providing the right care. It prioritises comfort and works across settings e.g. between home and hospital to provide seamless care. It puts the person with dementia at the centre in understanding what is important for their care. We have developed training packages for staff, which includes face to face training, animated videos and comprehensive manuals. The framework is hosted on a digital app called ATouchAway.

We conducted a series of eight online and in-person workshops with practitioners from different care settings and backgrounds, family carers and people living with dementia (including younger onset dementia). We deliberately aimed to include people with a range of different experiences.

In the workshops we shared information from Work Streams 1-4 and used this to develop prototype decision aids and refine the flow of the framework including how it is to be used, when and by whom. They helped us to develop the content and design of the framework. Importantly, we considered how this can be delivered, put into practice and fit within the current systems. Two of our PhD students have worked with us on the co-design to provide a deep dive into issues of implementation of the intervention and explore shared decision making using the framework.

We conducted user testing in a workshop with family carers and professionals form health and social care, and a separate workshop with carers and people living with dementia, which helped us to refine the framework and its delivery. The framework is now ready to be tested in WS6.

Work Stream 5 is led by Dr Nathan Davies

EMBED-Care's final Work Stream aims to understand how the intervention, called the EMBED-Care Framework, may work, what is needed to support its use, and to test the methods for a future large-scale trial. We want to know: 

Whether the EMBED-Care Framework feasible for use in practice?

How we may need to adapt it to support its use across different care settings?

Whether we can recruit people with dementia, carers and staff to a trial?

What support is needed to ensure the EMBED-Care Framework used in the way it is intended?

What are the best methods for a large-scale trial to determine whether the EMBED-Care Framework is effective and used in the way it is intended?

To answer these questions will first run a feasibility study and then a pilot study. 

Feasibility study: The EMBED-Care Framework will be used in two community teams and two care homes in the care of people with dementia for six months. We will recruit forty people with dementia (10-12 in each team). We will collect data at the start (baseline) and monthly; use routine data including patient records; conduct focus groups or semi-structured interviews and use observations of practice. These will be used to understand how the intervention is used and informs practice, what is required to support its use in care, and how it needs to be adapted to context.

Pilot study: We will test the EMBED-Care Framework compared to usual care in four community teams and six care homes, with 100 people with dementia. Five settings will be randomised to receive the intervention and five will receive usual care. The study will last nine months. We will collect data at baseline and monthly, conduct focus groups/interviews, and collect data on the methods for a large-scale trial and economic evaluation, including, for example recruitment and data collection processes.

At the end of this we will have a refined EMBED-Care Framework. We will understand how the EMBED-Care Framework works to deliver integrated palliative care. We will also know what is needed to support the use of EMBED-Care Framework, and how it may need to be adapted to different contexts. We will end up with an intervention that can be used in a large-scale trial where we will also be able to conduct an economic evaluation.

Work Stream 6 is led by Dr Clare Ellis-Smith