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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

Research output: Contribution to journalArticle

Standard

Empowering Better End-of-Life Dementia Care (EMBED-Care) : A mixed methods protocol to achieve integrated person-centred care across settings. / Sampson, Elizabeth L; Anderson, Janet; 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, Rob; Ward, Jane; Warren, Jason; Evans, Catherine J.

In: International Journal of Geriatric Psychiatry, 18.12.2019.

Research output: Contribution to journalArticle

Harvard

Sampson, EL, Anderson, J, Candy, B, Davies, N, Ellis-Smith, C, Gola, A, Harding, R, Kenten, C, Kupeli, N, Mead, S, Moore, KJ, Omar, RZ, Sleeman, KE, Stewart, R, Ward, J, Warren, J & Evans, CJ 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

APA

Sampson, E. L., Anderson, J., Candy, B., Davies, N., Ellis-Smith, C., Gola, A., ... Evans, C. J. (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

Vancouver

Sampson EL, Anderson J, Candy B, Davies N, Ellis-Smith C, Gola A et al. 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. 2019 Dec 18. https://doi.org/10.1002/gps.5251

Author

Sampson, Elizabeth L ; Anderson, Janet ; 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, Rob ; Ward, Jane ; Warren, Jason ; Evans, Catherine J. / Empowering Better End-of-Life Dementia Care (EMBED-Care) : A mixed methods protocol to achieve integrated person-centred care across settings. In: International Journal of Geriatric Psychiatry. 2019.

Bibtex Download

@article{3da5edc514f94406bb2260872a96e523,
title = "Empowering Better End-of-Life Dementia Care (EMBED-Care): A mixed methods protocol to achieve integrated person-centred care across settings",
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.",
keywords = "dementia, end-of-life care, family caregivers, health economics, health services research, implementation science, palliative care, policy, quality of life, symptom assessment",
author = "Sampson, {Elizabeth L} and Janet Anderson and Bridget Candy and Nathan Davies and Clare Ellis-Smith and Anna Gola and Richard Harding and Charlotte Kenten and Nuriye Kupeli and Simon Mead and Moore, {Kirsten J} and Omar, {Rumana Z} and Sleeman, {Katherine E} and Rob Stewart and Jane Ward and Jason Warren and Evans, {Catherine J}",
note = "This article is protected by copyright. All rights reserved.",
year = "2019",
month = "12",
day = "18",
doi = "10.1002/gps.5251",
language = "English",
journal = "International Journal of Geriatric Psychiatry",
issn = "0885-6230",

}

RIS (suitable for import to EndNote) Download

TY - JOUR

T1 - Empowering Better End-of-Life Dementia Care (EMBED-Care)

T2 - A mixed methods protocol to achieve integrated person-centred care across settings

AU - Sampson, Elizabeth L

AU - Anderson, Janet

AU - Candy, Bridget

AU - Davies, Nathan

AU - Ellis-Smith, Clare

AU - Gola, Anna

AU - Harding, Richard

AU - Kenten, Charlotte

AU - Kupeli, Nuriye

AU - Mead, Simon

AU - Moore, Kirsten J

AU - Omar, Rumana Z

AU - Sleeman, Katherine E

AU - Stewart, Rob

AU - Ward, Jane

AU - Warren, Jason

AU - Evans, Catherine J

N1 - This article is protected by copyright. All rights reserved.

PY - 2019/12/18

Y1 - 2019/12/18

N2 - 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.

AB - 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.

KW - dementia

KW - end-of-life care

KW - family caregivers

KW - health economics

KW - health services research

KW - implementation science

KW - palliative care

KW - policy

KW - quality of life

KW - symptom assessment

UR - http://www.scopus.com/inward/record.url?scp=85078275890&partnerID=8YFLogxK

U2 - 10.1002/gps.5251

DO - 10.1002/gps.5251

M3 - Article

C2 - 31854477

JO - International Journal of Geriatric Psychiatry

JF - International Journal of Geriatric Psychiatry

SN - 0885-6230

ER -

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