EMBED-Care
Research type
Research Study
Full title
Empowering Better End of Life Dementia Care (EMBED-Care Programme)
IRAS ID
268797
Contact name
Elizabeth Sampson
Contact email
Sponsor organisation
University College London
ISRCTN Number
ISRCTN16231169
Clinicaltrials.gov Identifier
UCL Data Protection, Z6364106/2019/11/16
Duration of Study in the UK
4 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.
EMBED-Care comprises 6 linked work streams (WS). We will use these to build, develop and test a new model of palliative dementia care, meaning palliative care is a vital part of dementia care across health and social care services, regardless of age or dementia type.
We will begin by reviewing the literature to develop a framework of palliative dementia care in WS1. Alongside this WS2 will use existing anonymised clinical data to understand when, why and how often people with dementia move between care settings.
In WS3 we will follow people with dementia and their carers for 12 months and ask about symptoms, unmet health, psychological or social needs and services used. We will include people with young onset and prion dementias and their carers.
WS4 draws together our findings from WS1-3 to develop a decision making matrix that will match patient, carer and health care workers care needs to palliative treatments. This will inform a decision-making aid for staff and carers to provide the right care, at the right time, in the right place.
A new model of palliative care will be co-designed with people with dementia and their carers in WS5. It will focus on the person with dementia and their care goals for staff and carers to help them make decisions about care. We will develop staff training packages and test the new model of palliative dementia care in WS6. We will check how well this works across care homes and at home to ensure it is practical, feasible and useful.
REC name
London - Queen Square Research Ethics Committee
REC reference
20/LO/0295
Date of REC Opinion
15 May 2020
REC opinion
Further Information Favourable Opinion