Scales measuring the Impact of Dementia on Carers (SIDECAR)
About the project
Family carers of people with dementia have the legal right to an assessment of their needs. Many community organisations provide carer assessments but these are usually focused on carers’ practical needs. To maintain quality of life, assessments also need to consider psychological and social needs. The SIDECAR (Scales In Dementia CARer quality of life), is a questionnaire which measures these different aspects of caregiving and quality of life.
Several carer organisations have expressed interest in using SIDECAR. We plan to work with four organisations in the north of England to assess if SIDECAR can help identify carers who need more support, and if it can help organisations improve carers’ lives. Carer organisations will be able to use this information to improve their services and inform decision making.
SIDECAR will be also translated into Punjabi and Urdu to enable organisations to use the tool with confidence with a wider range of carers. This will benefit south Asian carers who are often excluded due to the lack of culturally acceptable social care focused tools.
Aims and objectives
The primary aim of this study is to assess whether SIDECAR is a useful tool for social care professionals to identify carers in need of support. In addition, we will also evaluate whether SIDECAR can be used by carer organisations to improve the quality of their services. Finally, we will identify the barriers and facilitators to implementing tools such as SIDECAR in social care settings.
Plan of work
The project will be organised across three phases: pre implementation, implementation, and post implementation.
The pre-implementation phase will involve setting up stakeholder groups and workshops to understand the needs of each organisation. We will conduct focus groups with staff and carers at each organisation, and offer training workshops on how to use SIDECAR.
During the implementation phase, the project team will support organisations to use SIDECAR and keep a record of such activities. Each organisation will use SIDECAR with at least 30 carers. The research team will conduct monthly reviews with staff to identify any emergent issues.
The post-implementation evaluation work will involve more focus groups at each organisation to learn about staff and carers’ experience of using SIDECAR. We will ask them about what worked and what didn’t. We will look at SIDECAR data and user reflections to assess how effectively SIDECAR was used. This will help us understand the barriers and facilitators to using SIDECAR as a tool to provide appropriate support for dementia carers. Once all data is assessed, a toolkit will be produced to support other organisations wishing to embed SIDECAR into their own practices.
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
help inform how they will use SIDECAR and to test its usefulness. Carers will also become part of the project team, helping to develop the study as well as supporting data analysis and dissemination.
Funding
This project is funded by the National Institute of Health Research (NIHR) under its Research for Social Care Programme (grant reference number NIHR 202979