Title: Achieving Quality and Effectiveness in Dementia Using Crisis Teams (AQUEDUCT)
Funder: Department of Health and Social Care

Abstract: Aims and Objectives: To improve the quality and effectiveness of care for people with dementia and their carers experiencing a crisis by developing a best practice Resource Kit for Dementia Crisis Teams (DCTs) and conducting a feasiblity study. To conduct a cluster randomised controlled clinical trial (with internal pilot) in DCTs to evaluate the clinical and cost effectiveness of the Resource Kit in comparison with usual care for people with dementia in; reducing hospital admissions, improving quality of life, and reducing costs. To optimise the implementation of the Resource Kit. Background and rationale: The Prime Minister's Challenge on Dementia has prioritised improving dementia care and research on non-drug interventions. In recent years crisis teams to support people with dementia at home have developed rapidly with the aims of avoiding hospital admissions, supporting people at home, and reducing the overall costs of care. There are indications that dementia crisis teams may improve care and reduce admissions but there is no well-defined model and no accepted standards of good practice. This means that a programme of research improving practice and evaluating the effectiveness of DCTs is urgently needed. Research environment: NELFT is an excellent site to conduct dementia research with several major research programmes, high recruitment, 20+ peer reviewed publications per year, and 5 PhD students. The applicants have a successful record of working together in: the INTERDEM research network, and the DEMCARE, SHIELD, VALID and iCST studies. Research plan: WP1: We will determine best practice in Dementia Crisis Teams (DCTs) using: a national scoping exercise to investigate the range, and characteristics of practice, and referral pathways, for teams managing crises in people with dementia; a review of the evidence; the perspectives and experiences of service users, carers, the voluntary sector, professionals, and experts; an assessment of barriers to and facilitators of implementation of best practice; and a consensus process to achieve synthesis of these sources of evidence. This will be used to formulate an evidence-based conceptual model and recommendations for achieving best practice in DCT organisation and operation to guide research and practice, and to develop and validate a Implementation Measure to assess to what extent this is achieved and test this in practice. We will develop a Resource Kit for achieving high quality and effective care. The Resource Kit will include: Home Treatment Protocol (HTP), best practice recommendations for DCT organisation, and the Implementation Measure. WP2: We will conduct a feasibility study to evaluate the methodology, use of the Resource Kit, appropriate patient and carer outcome measures, costs and implementation. WP3: We will conduct a cluster randomised controlled clinical trial (with internal pilot) of DCTs to evaluate the clinical and cost effectiveness of the Resource Kit in comparison with usual care for people with dementia in reducing admissions, improving quality of life, and reducing costs. In a proportion of DCTs in the control group we will implement the Resource Kit in DCT routine practice collecting basic data, and evaluating implementation. Projected Outputs & Dissemination plans: We will publish standardised training packages for the Resource Kit (includes HTP manual and DVD, best practice guidance and Implementation Measure) and make them widely available. Dissemination will include: major papers (eg RCT) targeted at very high impact journals; other papers for high impact general/specialist journals; conference presentations; website and PPI materials. Relevant expertise & experience of the research team: Old age psychiatry (MO/TD), mental health services research (SJ/BLE), clinical/health/organisational psychology (SMichie/EMC/SO) community/social care (DC), sociology/qualitative research (FP), trial design/methodology (RW/IH), statistics (RW), health economics (S Morris), PPI/carer issues (FP/DP), and implementation science (S Michie). Justification of costs: Costs are tailored towards the resources needed for a programme of this scale. This includes staff time (applicants, programme manager, admin, research assistants, NWORTH trials unit, health economics), travel, consumables, meetings/conferences, dissemination and PPI involvement. Management & Governance, Programme Management, and ethical implications: The Programme Steering Committee will oversee the programme and the Programme Management Group provides strategic and operational management supported by NWORTH trials unit. AQUEDUCT will be approved through the research ethics committee and follow standard research governance procedures including compliance with Good Clinical Practice (GCP). We follow the National Research Ethics Authority guidance regarding people who lack capacity. Patient and Public Involvement: Developing this proposal we consulted extensively with people with dementia, carers, and the voluntary sector. Carers said that poor care during a crisis could lead to prolonged hospitalisation. The PSC/PMG both include David Prothero (coapplicant and former carer). Fiona Poland who has very extensive PPI experience is the co-applicant lead for PPI, and will lead the PPI Steering Group.

Lay abstract: In the UK over 700,000 older people have dementia. This has major impact on services (costing over &pound;17 billion a year) and family carers (who save the UK over &pound;6 billion of further costs a year). Dementia research is a national priority and home-orientated care is a key objective of the National Dementia Strategy. People with dementia prefer to remain at home but fluctuations in their health and social circumstances require skilled management to prevent breakdown in their care. In recent years, crisis teams to help people with dementia be supported at home have been rapidly developing, and now form an important part of mental health services for older people. Managing crises at home can increase the skills of staff, family carers, and people with dementia enabling them to avoid (or delay) hospitalisation or long term care, and reducing costs. Admission to hospital can increase confusion and carries risks of over medication and poor quality care. We talked to many people with dementia, family carers, and staff about crises and how to manage them. They described current systems as a 'muddle' and welcomed a study to provide a more coordinated, proven approach. We reviewed the research literature and current practice but found little evidence on managing crises in dementia and no best practice guidance for crisis teams. We have already developed a Home Treatment Protocol and manual that teams can use to help manage crises, for people with dementia and their family carers. The proposed study works with family carers, people with dementia and staff to develop a model of best practice for dementia crisis teams. We will develop a Resource Kit for achieving high quality care including: Home Treatment Protocol; training and guidance on achieving best practice for dementia crisis teams. We will get feedback on the Resource Kit to improve it. We will carry out a clinical trial for people with dementia referred to dementia crisis teams. Half of the teams will use the Resource Kit and half will provide usual care. At three and six months we will compare the number of hospital admissions, quality of life, satisfaction with services, and costs of care for people using the Kit with those who do not. We will follow national ethics guidance for including people with dementia and carers in research. The research team includes leading experts in dementia care research (eg psychiatry, psychology, research methods) who have significant experience leading major studies. This study could lead to major improvements in how services are organised which could have major benefits for people with dementia and their carers to help avoid hospital admissions, improve satisfaction with services and quality of life, and reduce costs of care.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;7.1 INDIVIDUAL CARE NEEDS
Health categories: NEUROLOGICAL