Dementia is the most common cause of death in the UK. By 2040 it is estimated that annually 220,000 people will die with dementia, with many experiencing distressing symptoms like pain and agitation. Access to good care for people with dementia towards end of life is highly unequal. In the UK, those who make decisions about care and develop policy do not have sufficient information to deliver solutions to improve care that focuses on the person and their needs or to plan future services, for which there will be increasing demand.
Empowering Better End of Life Dementia Care (EMBED-Care) is a five-year collaboration between King's College London and University College London, and brings together collaborators, clinicians, policy makers, patients and families to form a network, which will inform our work. Our six interconnected projects will lead to the development and testing of an intervention, which people with dementia, informal carers and health and social care professionals will help design. The intervention will prioritise comfort and what is important to each person to ensure the right services are 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. Through EMBED-Care we will provide evidence and generate a step-change in how care is provided for people of any age with any type of dementia to maximise their quality of life.
We will spark public conversations on dying with dementia, engage the public in our work by combining art and science through our policy and public engagement work.