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

被引:19
作者
Sampson, Elizabeth L. [1 ,2 ]
Anderson, Janet E. [3 ]
Candy, Bridget [1 ]
Davies, Nathan [1 ,4 ]
Ellis-Smith, Clare [5 ]
Gola, Anna [1 ]
Harding, Richard [5 ]
Kenten, Charlotte [1 ]
Kupeli, Nuriye [1 ]
Mead, Simon [6 ,7 ]
Moore, Kirsten J. [1 ]
Omar, Rumana Z. [8 ]
Sleeman, Katherine E. [5 ]
Stewart, Robert [9 ,10 ]
Ward, Jane [1 ]
Warren, Jason D. [11 ]
Evans, Catherine J. [5 ,12 ]
机构
[1] UCL, Marie Curie Palliat Care Res Dept, Div Psychiat, London, England
[2] Barnet Enfield & Haringey Mental Hlth Trust, North Middlesex Univ Hosp, Liaison Psychiat Team, London, England
[3] Kings Coll London, Florence Nightingale Fac Nursing Midwifery & Pall, Dept Adult Nursing, London, England
[4] UCL, Res Dept Primary Care & Populat Hlth, Ctr Populat Ageing Studies, London, England
[5] Kings Coll London, Florence Nightingale Fac Nursing Midwifery & Pall, Cicely Saunders Inst Palliat Care Policy & Rehabi, London, England
[6] Univ Coll London Hosp NHS Fdn Trust, Natl Hosp Neurol & Neurosurg, Natl Prion Clin, London, England
[7] UCL, MRC Prion Unit, Inst Prion Dis, London, England
[8] UCL, Dept Stat Sci, London, England
[9] Kings Coll London, Inst Psychiat Psychol & Neurosci, London, England
[10] South London & Maudsley NHS Fdn Trust, London, England
[11] UCL, Dementia Res Ctr, Inst Neurol, Queen Sq, London, England
[12] Sussex Community NHS Fdn Trust, Brighton, E Sussex, England
基金
英国经济与社会研究理事会;
关键词
dementia; end-of-life care; family caregivers; health economics; health services research; implementation science; palliative care; policy; quality of life; symptom assessment; PALLIATIVE CARE; OLDER-PEOPLE; COMPLEX INTERVENTIONS; EUROPEAN ASSOCIATION; CAREGIVER BURDEN; COHORT; SYMPTOMS; SERVICES; DISEASE; DESIGN;
D O I
10.1002/gps.5251
中图分类号
R592 [老年病学]; C [社会科学总论];
学科分类号
03 ; 0303 ; 100203 ;
摘要
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.
引用
收藏
页码:820 / 832
页数:13
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