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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

Sampson, EL; Anderson, J; Candy, B; Davies, N; Ellis-Smith, C; Gola, A; Harding, R; ... Evans, CJ; + view all (2020) 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 10.1002/gps.5251. (In press). Green open access

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Abstract

Objectives: 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. Methods: 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. Conclusions: 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.

Type: Article
Title: Empowering Better End‐of‐Life Dementia Care (EMBED‐Care): A mixed methods protocol to achieve integrated person‐centred care across settings
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1002/gps.5251
Publisher version: https://doi.org/10.1002/gps.5251
Language: English
Additional information: This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Keywords: Dementia, end-of-life care, family caregivers, health economics, health services research, implementation science, palliative care, policy, quality of life, symptom assessment
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Institute of Prion Diseases
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Institute of Prion Diseases > MRC Prion Unit at UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Neurodegenerative Diseases
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health > Primary Care and Population Health
UCL > Provost and Vice Provost Offices > UCL BEAMS
UCL > Provost and Vice Provost Offices > UCL BEAMS > Faculty of Maths and Physical Sciences
UCL > Provost and Vice Provost Offices > UCL BEAMS > Faculty of Maths and Physical Sciences > Dept of Statistical Science
URI: https://discovery.ucl.ac.uk/id/eprint/10088452
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