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

Elizabeth L Sampson; Janet Anderson; Bridget Candy; Nathan Davies; Clare Ellis-Smith; Anna Gola; Richard Harding; Charlotte Kenten; Nuriye Kupeli; Simon Mead; Kirsten J Moore; Rumana Z Omar; Katherine E Sleeman; Rob Stewart; Jane Ward; Jason Warren; Catherine J Evans

doi:10.1002/gps.5251

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

Elizabeth L Sampson, Janet Anderson, Bridget Candy, Nathan Davies, Clare Ellis-Smith, Anna Gola, Richard Harding, Charlotte Kenten, Nuriye Kupeli, Simon Mead, Kirsten J Moore, Rumana Z Omar, Katherine E Sleeman, Rob Stewart, Jane Ward, Jason Warren, Catherine J Evans

Barnet Enfield and Haringey Mental Health Trust Liaison Psychiatry Team, North Middlesex University Hospital, London, UK.
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK.
Centre for Population Ageing Studies, Research Department of Primary Care and Population Health, University College London, UK.
National Prion Clinic, National Hospital for Neurology and Neurosurgery, University College London Hospitals NHS Foundation Trust, and MRC Prion Unit at UCL, Institute of Prion Diseases, London, UK.
UCL University College London
SLaM South London and Maudsley NHS Foundation Trust

Research output: Contribution to journal › Article › peer-review

18 Citations (Scopus)

123 Downloads (Pure)

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.

Original language	English
Journal	International Journal of Geriatric Psychiatry
DOIs	https://doi.org/10.1002/gps.5251
Publication status	E-pub ahead of print - 18 Dec 2019

Keywords

dementia
end-of-life care
family caregivers
health economics
health services research
implementation science
palliative care
policy
quality of life
symptom assessment

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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Sampson_et_al-2019-EMBED-Care_International_Journal_of_Geriatric_PsychiatryAccepted author manuscript, 1.37 MBLicence: Unspecified

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Sampson, E. L., Anderson, J., Candy, B., Davies, N., Ellis-Smith, C., Gola, A., Harding, R., Kenten, C., Kupeli, N., Mead, S., Moore, K. J., Omar, R. Z., Sleeman, K. E., Stewart, R., Ward, J., Warren, J., & 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. Advance online publication. https://doi.org/10.1002/gps.5251

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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}",

year = "2019",

month = dec,

day = "18",

doi = "10.1002/gps.5251",

language = "English",

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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

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

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

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DO - 10.1002/gps.5251

M3 - Article

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SN - 0885-6230

JO - International Journal of Geriatric Psychiatry

JF - International Journal of Geriatric Psychiatry

ER -

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

Abstract

Keywords

UN SDGs

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