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Empowering Better End-of-Life Dementia Care (EMBED-Care): A mixed methods protocol to achieve integrated person-centred care across settings.

Authors :
Sampson, Elizabeth L.
Anderson, Janet E.
Candy, Bridget
Davies, Nathan
Ellis‐Smith, Clare
Gola, Anna
Harding, Richard
Kenten, Charlotte
Kupeli, Nuriye
Mead, Simon
Moore, Kirsten J.
Omar, Rumana Z.
Sleeman, Katherine E.
Stewart, Robert
Ward, Jane
Warren, Jason D.
Evans, Catherine J.
Ellis-Smith, Clare
Source :
International Journal of Geriatric Psychiatry; Aug2020, Vol. 35 Issue 8, p820-832, 13p, 1 Diagram, 2 Charts
Publication Year :
2020

Abstract

<bold>Objectives: </bold>Globally, the number of people with dementia who have palliative care needs will increase fourfold over the next 40 years. The Empowering Better End-of-Life Dementia Care (EMBED-Care) Programme aims to deliver a step change in care through a large sequential study, spanning multiple work streams.<bold>Methods: </bold>We will use mixed methods across settings where people with dementia live and die: their own homes, care homes, and hospitals. Beginning with policy syntheses and reviews of interventions, we will develop a conceptual framework and underpinning theory of change. We will use linked data sets to explore current service use, care transitions, and inequalities and predict future need for end-of-life dementia care. Longitudinal cohort studies of people with dementia (including young onset and prion dementias) and their carers will describe care transitions, quality of life, symptoms, formal and informal care provision, and costs. Data will be synthesised, underpinned by the Knowledge-to-Action Implementation Framework, to design a novel complex intervention to support assessment, decision making, and communication between patients, carers, and inter-professional teams. This will be feasibility and pilot tested in UK settings. Patient and public involvement and engagement, innovative work with artists, policymakers, and third sector organisations are embedded to drive impact. We will build research capacity and develop an international network for excellence in dementia palliative care.<bold>Conclusions: </bold>EMBED-Care will help us understand current and future need, develop novel cost-effective care innovations, build research capacity, and promote international collaborations in research and practice to ensure people live and die well with dementia. [ABSTRACT FROM AUTHOR]

Details

Language :
English
ISSN :
08856230
Volume :
35
Issue :
8
Database :
Complementary Index
Journal :
International Journal of Geriatric Psychiatry
Publication Type :
Academic Journal
Accession number :
144668570
Full Text :
https://doi.org/10.1002/gps.5251