Title: EFFECTIVE HOME SUPPORT IN DEMENTIA CARE: COMPONENTS, IMPACT AND COSTS OF TERTIARY PREVENTION
Funder: Department of Health and Social Care

Abstract: AIM To conduct a programme of research to discern different models of home support, systematise them, survey their current operation and evaluate their cost-effectiveness in providing care for people with dementia/their carers, from the NHS in partnership with local authority social care and voluntary organisations. OBJECTIVES 1) To develop evidenced-based guidance on home support models for dementia care with direct applicability by NHS Trusts and partner organisations to derive benefits in terms of more efficient and effective care and enhance the patient/carer experience by conducting: a) An evidence synthesis of which components lead to cost-effective care and how these can be combined into different models of home support. b) An appraisal of how the current pattern of provision in England conforms to these models. c) An evaluation of different emerging models of home support in later stage dementia. 2) To test for preliminary evidence of a model in early stage dementia through a pragmatic implementation trial. 3) To determine the effectiveness and cost-effectiveness of different models of support in enhancing well-being, reducing the number of hospital admissions and delaying care home admission. 4) To determine the effectiveness of supported implementation of evidence-based guidance through a toolkit developed in one Trust area and partner organisations and roll out with commissioners, managers and practitioners. 5) To conduct an integrated quantitative and qualitative evaluation from the viewpoint of carers and people with dementia concerning the costs of home support and their preferences for different attributes of care. BACKGROUND With population ageing, dementia represents a significant challenge. It is a major cause of disability and high cost care for older people and most people with dementia live at home. An immediate priority is helping them to live well at home, which necessitates developing effective and efficient home support services. However, little is known about which models of home support offer effective care and there has been little translation of evidence into routine practice within the NHS and partner organisations. Existing operational models are undeveloped and tend not to rely on research evidence. The proposed programme intends to explicate the models in existence and translate these into practice by provision and testing of evidence-based guidelines and the development and testing of a pragmatic intervention in early-stage dementia. RESEARCH PLAN Workstream 1: (1.1) Evidence synthesis of literature detailing the effective components of dementia care and applying these to home support models; (1.2) A survey of current provision in England applying these models; (1.3) Developing an economic model of the cost-effectiveness of home support for dementia. Workstream 2: (2.1) A stratified randomised controlled trial of dementia advice workers in addition to treatment as usual across 9 memory clinics, post-diagnosis and after 12 months; (2.2) Naturalistic study comparing specialist models of home support, compared to generic home care, after statutory assessment in the community. Economic analysis in both. (2.3) Field testing of a dementia toolkit to guide managers/commissioners. Workstream 3:(3.1) Analysis of costs to people with dementia/carers through focus groups; (3.2) Discrete Choice Experiment eliciting preferences for components of support; (3.3) Economic cost-utility modelling of impact of home support models in England. RESEARCH TEAM It has extensive experience in applied research in older people s services and dementia, including: old age psychiatry, nursing, occupational therapy, social care, sociology/qualitative analysis, statistics, health economics, systematic reviews, trial design and memory services. The team possess the authority to ensure implementation and dissemination of findings in the NHS and social care. RESEARCH ENVIRONMENT PSSRU at the University of Manchester, where the study will be based has an international reputation for research in long term care and community based care. There are good existing research links between the two main Trusts involved and the applicants in inter-disciplinary working on NIHR funded research. The programme will exploit the links that already exist between the investigators and their host institutions to maximise the quality and dissemination of the research. ANTICIPATED OUTPUTS/OUTCOMES AND IMPACT Outputs of the programme will include: a database of current provision regarding home support in dementia across the NHS and social care; a toolkit to guide managers and practitioners; a technical report examining national availability and impact/cost-effectiveness; and a consensus statement for patients and the public concerning the most effective home support models for people with dementia/their carers. The results from the programme can be implemented in similar care settings (memory clinics, voluntary organisations and following statutory community care assessments). PUBLIC INVOLVEMENT Local carers groups have been involved in the development of this application by meeting with the research team and commenting on drafts of the proposal. The programme will have a dedicated PPC Group contributing to all programme components. A local reference group and a larger lay advisory panel will be used for consultation and comment throughout the life of the programme. A steering group will also contain patient and public representatives.

Lay abstract: The research programme intends to improve understanding of home support provided to people with dementia and their carers through 9 studies divided into three workstreams. Identification of the components of home support that benefit patients and their carers; their presence in existing provision nationally; and development of an economic model to inform decisions about value and commissioning. Assessment of the impact of two forms of home support - a new approach early in dementia through advice workers in memory clinics and different ways of providing home support later in dementia - summarised in a toolkit to guide managers and commissioners in how best to provide home support. Evaluation of costs and consequences of different approaches to home support through analysis of relative balance between costs of carer and statutory support; the value that carers, patients and professionals place on different components and outcomes of care; and economic modelling. This proposal addresses several key objectives of the Ministerial Advisory Group on Dementia Research: testing a pragmatic and translatable non drug intervention; an evaluation of different models of community based care; developing patient related outcome measures; and developing new researchers in dementia care. It will be undertaken by a multidisciplinary team led from Manchester with colleagues from London, Swansea and East Anglia. Dementia care poses a significant health and care challenge for the public. However, there is limited evidence of the current pattern of home support, its costs and effects at different stages of the condition. The programme addresses this evidence gap. For patients it offers the possibility of more effective forms of care, tailored to the stage and severity of the illness and their own preferences. Gains for providers are likely in the short to medium term and potentially include a reduction in unplanned hospital admissions and reduced prescribing costs.

Research activity codes: 8.2 HEALTH AND WELFARE ECONOMICS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: NEUROLOGICAL