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 (Scales In Dementia CARer quality of life) measure these different aspects of caregiving and quality of life.

We worked 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. We concluded that: organisations need to make careful plans to succeed in implementing SIDECAR; SIDECAR was usable and could be useful; SIDECAR helps to draw attention to important psychological and social impacts of caring. As a result of our study, we have produced the SIDECAR Toolkit (download here) to assist organisations to successfully introduce SIDECAR into their organisation.

Aims and objectives

The primary aim was to assess whether SIDECAR is a useful tool for social care professionals to identify carers in need of support to improve their quality of life. In addition, we evaluated whether SIDECAR can be used by carer organisations to improve the quality of their services. Finally, we identified the barriers and facilitators to implementing tools such as SIDECAR in social care settings.

Plan of work

We worked with four carer organisations to evaluate the implementation and impact of SIDECAR. The project was organised across three phases:

Pre-implementation: Each organisation was supported to develop aims and implementation plans appropriate to their goals for using SIDECAR.
Implementation: The project team supported organisations to implement SIDECAR. Each organisation used SIDECAR with around 30 carers over 12 months.
Post-implementation: Focus group data were gathered from staff and carers to understand the context, organisational culture, and barriers/facilitators to implementation.

Patient and public involvement

The involvement of carers and carer support workers was vital to this project. We worked closely with both. At each organisation, we set up a leadership group consisting of carers and staff to help inform how they planned to use SIDECAR and to test its usefulness. Carers were also part of the project team, helping to develop the study as well as supporting data analysis and dissemination.

The project findings

The four case study organisations made various uses of SIDECAR:

To learn more about unpaid family carers to inform provision of support for them.
To review current support services and improve them.
To fit alongside existing tools to see if SIDECAR improved carer assessments.
To provide data on service impact to demonstrate effectiveness to funders.

Organisation staff expressed initial concerns about workloads and fears that the questions might alarm carers. In practice neither proved to be the case. Some staff felt that SIDECAR’s agree/disagree format lacked range (they would have liked a comments box or a neutral option); that SIDECAR would raise carer expectations of service support that could not be achieved; and some were unclear why their organisation wanted to use SIDECAR and would have appreciated more clarity. In practice, most found that SIDECAR worked well alongside existing carer assessment processes, though it was not a complete alternative. It was helpful to designate a member of staff acting as a SIDECAR “champion”. This person could motivate, support and advise colleagues. Most stated that SIDECAR data would help them to demonstrate to funding bodies their effectiveness in providing support.

Family carers felt that SIDECAR would help them provide better care. Some considered the questions “scary” but recognised the need to be aware of issues raised. Some considered the agree/disagree format restrictive, but others said it made the survey straightforward to complete. All found the wording appropriate. Most preferred to complete SIDECAR with an advisor. SIDECAR helped carers identify impacts of care and gave them “permission to think about themselves”. After using SIDECAR, carers said they had become more comfortable about asking for support. Although few felt SIDECAR had led to significant changes in service support, most felt more valued after completing it.

The SIDECAR Toolkit

On the basis of the study findings, the research team has developed a “Toolkit” to support any other organisation wanting to implement SIDECAR into its practices. The Toolkit consists of the following sections: how and why SIDECAR was developed; the uses to which it can be put; its potential benefits; how to analyse its data; and a “trouble-shooting” list of tips, drawing on barriers experienced by the case study organisations and explaining how they might be overcome.

The Toolkit, along with several other useful documents it refers to, can be downloaded below.

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