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


OBJECTIVE
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.


METHODS
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.


METHODS
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.


CONCLUSIONS
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.
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London (UCL), London, UK caroline.jones@ucl.ac.uk.
Louise
L
Jones
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London (UCL), London, UK.
Bridget
B
Candy
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London (UCL), London, UK.
Sarah
S
Davis
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London (UCL), London, UK.
Margaret
M
Elliott
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London (UCL), London, UK.
Anna
A
Gola
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London (UCL), London, UK.
Jane
J
Harrington
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London (UCL), London, UK.
Nuriye
N
Kupeli
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London (UCL), London, UK.
Kathryn
K
Lord
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London (UCL), London, UK.
Kirsten
K
Moore
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London (UCL), London, UK St Christopher's Hospice, Sydenham, UK.
Sharon
S
Scott
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London (UCL), London, UK.
Victoria
V
Vickerstaff
Department of Statistical Science, University College London (UCL), London, UK.
Rumana Z
RZ
Omar
Division of Psychiatry, University College London (UCL), London, UK.
Michael
M
King
The Bamford Centre for Mental Health and Well Being, University of Ulster, Londonderry, UK.
Gerard
G
Leavey
Department of Primary Care and Population Health, University College London (UCL), London, UK.
Irwin
I
Nazareth
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London (UCL), London, UK Barnet Enfield and Haringey Mental Health Trust Liaison Psychiatry Team, North Middlesex University Hospital, London, UK.
Elizabeth L
EL
Sampson
D001291:Attitude of Health Personnel; D019033:Delivery of Health Care, Integrated / Q000458:organization & administration* / Q000592:standards; D003704:Dementia / Q000628:therapy*; D006801:Humans; D017146:Models, Organizational; D009735:Nursing Homes / Q000592:standards*; D010166:Palliative Care / Q000458:organization & administration / Q000592:standards; D011788:Quality of Life; D013727:Terminal Care / Q000458:organization & administration* / Q000592:standards; D006113:United Kingdom
Advanced dementia; complex interventions; end-of-life care; integrated care