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    Development of a model for integrated care at the end of life in advanced dementia: A whole systems UK-wide approach

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    Publication date
    2016
    Author
    Jones, L.
    Candy, B.
    Davis, S.
    Elliott, M.
    Gola, A.
    Harrington, J.
    Kupeli, N.
    Lord, Kathryn
    Moore, K.
    Scott, S.
    Vickerstaff, V.
    Omar, R.Z.
    King, M.
    Leavey, G.
    Nazareth, I.
    Sampson, E.L.
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    Keyword
    Advanced dementia; End-of-life care; Integrated care; Complex interventions
    Rights
    © 2015 The Authors. Published by SAGE. This article is distributed under the terms of the Creative Commons Attribution 3.0 License (http://www.creativecommons.org/licenses/by/3.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
    Peer-Reviewed
    yes
    
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    Abstract
    Background: The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. Aim: To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. Design: A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. Setting/participants: Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Professional stakeholders in all four countries of the United Kingdom contributed to the RAND/UCLA appropriateness method process. Results: A total of 29 statements were agreed and mapped to individual, group, organisational and economic/political levels of healthcare systems. The resulting main intervention components are as follows: (1) influencing local service organisation through facilitation of integrated multi-disciplinary care, (2) providing training and support for formal and informal carers and (3) influencing local healthcare commissioning and priorities of service providers. Conclusion: Use of in-depth data, consensus methods and theoretical understanding of the intervention components produced an evidence-based intervention for further testing in end-of-life care in advanced dementia.
    URI
    http://hdl.handle.net/10454/10471
    Version
    Published version
    Citation
    Jones L, Candy B, Davis S, Elliott M, Gola A, et al (2016) Development of a model for integrated care at the end of life in advanced dementia: A whole systems UK-wide approach. Palliative Medicine. 30 (3): 279-295.
    Link to publisher’s version
    http://dx.doi.org/10.1177/0269216315605447
    Type
    Article
    Collections
    Health Studies Publications

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