What is SIDECAR?

We have listened to the voices of carers of people with dementia to help us understand what life is like for them.  We hope that SIDECAR will be used to help identify carers who may need help to get them the right support at the right time.

SIDECAR stands for Scales measuring the Impact of DEmentia on CARers.  It is a questionnaire designed to measure the quality of life of carers of people with dementia.  The questionnaire is made up of 3 scales, one primary (18 questions) and two secondary (10 and 11 questions).  Each one measures a different ‘theme’.  All the questions within the scale are scored using a binary Agree/Disagree response format.  People are asked to respond for how they are TODAY.

How was SIDECAR Developed?

There were 3 stages:

Stage 1 – Carers were interviewed to ask them what life was like for them.  Once we found common themes in what they said, and using their actual words, we ended up with 70 questions and an agree/disagree response option.

Stage 2 – We asked carers in England and Wales to answer the 70 questions.  We used a number of different methods and tests to analyse their answers and work out which questions we should keep for the new quality of life questionnaire.  Three SIDECAR scales were developed and tested:

    • SIDECAR D: Direct Impact
    • SIDECAR I: Indirect Impact
    • SIDECAR S: Support and Information

Stage 3 – SIDECAR D was given to health economists involved in the study so they could carry out their own valuation work on it.  This involved looking at how dementia carers assessed their own health-related quality of life compared to the general public.  We hope that in the future the questionnaire can be used to measure the cost-effectiveness of interventions aimed at helping dementia carers.

Below is a diagram to show the SIDECAR scales, giving an example of a question within each scale.

How do we access it and Who can use it?

You will be able to access SIDECAR through the University of Leeds website.  It is important that this is done in a structured way so we will be asking people to register through the University’s licensing platform.  Until the Fast Licensing Platform is up and running please click here for instructions on how to register to use SIDECAR.

The SIDECAR questionnaires will be available for anyone to use.  We hope they will be used for individual carer assessment services, research into carer needs, and in the future for carer valuation work.