Sophie Crawley is a Research Assistant and Doctoral Research Fellow in the Marie Curie Palliative Care Research Department, University College London. Here, she introduces EMBED-Care; the ground-breaking research programme aiming to significantly improve palliative and end-of-life care for people with all types of dementia in the UK. EMBED-Care is a joint collaboration between the Marie Curie Palliative Care Research Department, University College London and the Cicely Saunders Institute, King’s College London.
Dementia is the commonest cause of death in the UK. One in three of us will die with dementia. Globally, Alzheimer’s disease and other dementias are the seventh most common cause of death.1 Currently, not everyone who dies with or dies from dementia receives appropriate high-quality end-of-life care and we do not fully know what is needed.
The UK’s EMBED-Care Programme 2 aims to address this pressing issue by developing and evaluating a new approach to ensure that palliative care is a vital part of dementia care across health and social care services, regardless of a person’s age or dementia stage or type. To increase our knowledge about what people need, we are starting a large cohort (group) study of people with dementia who may be nearing the end of their lives.
What do we hope to find out?
We will be talking to nearly 300 people living with dementia, their family or friend carers, as well as their healthcare professionals. We are recruiting people at any stage of dementia who have had an unplanned hospital admission as we know that this may be a marker that they are nearing the end of life. We will collect information on their unmet needs for up to 12 months and identify how these needs may impact on comfort, quality of life, the use of services and care transitions. We also want to understand why people with dementia are admitted to hospital towards the end of life and reduce burdensome hospitalisation when there is limited benefit for the person with dementia and their carers.
We will also explore family carers’ experiences of how care and services support them in their caring role. This is of particular interest to me as my PhD is looking at how a supportive care network can help carers cope with day-to-day stresses and feel emotionally supported.
We are running two innovative smaller cohort studies to develop crucial new knowledge and insights into unmet needs for people with Young Onset Dementias and Prion disease.
How will we use this new information?
We aim to empower people living with dementia, carers and staff to identify and address changing physical, psychosocial and spiritual needs with disease progression. The novel cohort study will generate new knowledge from people living with all types of dementia, carers and healthcare professionals. It will deliver a framework of palliative care for people affected by dementia. The framework is underpinned by conceptual understanding on priorities for palliative dementia care in the published evidence and policy, and analysis of anonymised clinical data on transitions in care settings towards the end of life. We have worked with people affected by dementia to ensure their needs are at the heart of our research and our new approach to dementia palliative care. We will use a co-design approach, which involves working together with people living with dementia, their family carers and professionals. Guided by their knowledge and experiences, we will collaboratively develop a service delivery intervention of integrated palliative dementia care. We will then evaluate this, to understand how well this works across settings from the home, care home and hospital to ensure it is practical, feasible and useful.
If you’d like to to learn more about the programme and its progress, to contact the team, or sign up for our newsletter, please visit the EMBED-Care website: www.ucl.ac.uk/embed-care.
Editor’s note: This post is among the Top Twenty most-viewed posts for 2021.
1.WHO, The top 10 causes of death https://www.who.int/news-room/fact-sheets/detail/the-top-10-causes-of-death [accessed 27.01.21]
2.Sampson, E.L. et al. (2019) Empowering Better End of Life Dementia Care (EMBED-Care): A mixed methods protocol to achieve integrated person-centred care across settings. International Journal of Geriatric Psychiatry. https://doi.org/10.1002/gps.5251
More about the author
Sophie Crawley is a Research Assistant on the EMBED-Care Cohort Study and a PhD student on the EMBED-Care Programme based in the Marie Curie Palliative Care Research Department at UCL. Sophie’s PhD is focussed on exploring the relationship between grief, burden and the role of social support and co-ordinated care in family carers of people living with dementia. Sophie has had various roles working with people with dementia and family carers, from quality improvement programmes of acute wards.
- Professor Liz Sampson is the Principal Investigator of EMBED-Care based at University College London and Dr Catherine Evans is the Co-Principal Investigator based at King’s College London.
- Read more posts about dementia and palliative care on the EAPC blog.