Title: Implementation of SIDECAR (scales measuring impact of dementia on carers) tool in social care settings.
Funder: Department of Health and Social Care

Abstract: Research question: This study will address whether SIDECAR (Scales in dementia carer quality of life) is effective in the identification of carers who require support and its usefulness as a tool for service improvement and informing commissioning of services. Background:. Many community organisations provide carer assessments but these are usually focused on carers practical needs. To maintain quality of life (QoL), assessments also need to consider psychological and social needs. A number of literature reviews have identified the lack of disease specific and psychometrically sound carer measures of QoL. SIDECAR was developed to be a dementia specific, psychometrically strong carer measure of QoL. The measure was developed to capture outcomes of importance to carers and accurately identify carers in need of support. In addition, the aim of SIDECAR was to act as a quality improvement tool for services and influence policy making and commissioning of services. Aims and objectives: The primary aim of this study is to evaluate the implementation and feasibility of SIDECAR as a tool for social care professionals to identify those carers in need of support. In addition, we will assess the potential usefulness of SIDECAR as an evaluation and quality improvement tool for carer organisations, and identify the barriers and facilitators to implementing evaluation tools such as SIDECAR in social care settings. Methods: This research is embedded within theories of change and implementation science. We will work with four carer organisations to implement and evaluate the impact of SIDECAR. The project will be organised across six work packages focusing on research governance (WP1), pre-implementation (WP2), Baseline evaluation (WP3), implementation (4), evaluation of implementation (WP5) , and impact (WP6). The implementation work packages will involve the setup of organisational stakeholder groups and workshops to understand the needs of the organisation. The implementation team will support organisations to implement SIDECAR and keep a record of such activities. The evaluation work packages will involve 3 focus groups and document analysis at each organisation prior to implementation to understand the context, organisational culture and barriers/facilitators to implementation. Each organisation will then use SIDECAR with a minimum of 30 carers over a period of 12 months. A further 3 focus groups at each organisation will be conducted by the evaluation team post implementation, to evaluate if SIDECAR was considered acceptable and useful. Timelines and delivery: This project will be delivered over 25 months. Anticipated impact and dissemination: An immediate impact will be any improvements in QoL for carers. Anticipated medium and long-term impacts include service improvements within carer organisations and influencing the commissioning of carer support services. A project advisory group (including local authorities and commissioners) will inform the study from the outset and will be key to ensuring further roll out and dissemination of SIDECAR. A toolkit will be produced to support other organisations to embed SIDECAR into their practice. We will disseminate finings via various routes including, policy briefings, blogs and events aimed at key stakeholders and academic articles.

Lay abstract: Aim: Our main aim is to find out how useful SIDECAR (a questionnaire) is for social care organisations when identifying carers that need support. We want to find out the best way to organisations can make use of SIDECAR and any barriers and facilitators to using SIDECAR. Background: The Alzheimer s Society estimates that families of people with dementia in the UK provide care equivalent to &pound;11.6 billion, which saves health and social care systems a significant amount of money. These carers have the legal right to an assessment of their needs. Many community organisations provide such assessments but these tend to focus on carers practical needs. Yet to maintain carer s quality of life, assessments also need to consider psychological and social needs. We have developed a questionnaire, SIDECAR, which measures these different aspects of caregiving and quality of life. A number of carer organisations have expressed an interest in using SIDECAR. We would like to work with four of these organisations in Yorkshire, to test if SIDECAR can help identify carers that need more help, and if it can help organisations improve their support. Design and methods: Our approach will involve (i) Understanding the needs of each organisation and potential problems to using SIDECAR. We will do this by conducting up to three discussion groups with staff and carers at each organisation. (ii) We will then provide a training workshop on how to use the SIDECAR for each organisation and ask them to use SIDECAR with at least 30 carers. The organisations will use SIDECAR to measure carers quality of life and will inform the support provided by the organisation. (iii) After 12 months, we will conduct further 3 more discussion groups at each organisation to find out about their experience of using SIDECAR. We will ask them about what worked and what didn t. We will look at records and notes to assess how well SIDECAR was used. (iv) We will hold workshops at each organisation to discuss how they plan to continue using SIDECAR. Patient and public involvement: The involvement of carers and carer support workers is vital to this project. We will work closely with both. At each organisation, we will set up a leadership group consisting of carers and staff, to adopt SIDECAR and test its usefulness. Carers will also be part of the project team and be involved in developing study materials, ethics, data analysis and dissemination. Dissemination: The project findings will lead to development of a toolkit to help social care organisations use tools such as SIDECAR. The toolkit will be freely available on our website and widely disseminated.

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