The DECIDE study was led by the University of Leeds, alongside researchers from Universities across the UK. Working in partnership with hundreds of carers, Carers Leeds, Alzheimers Society, Dementia UK, Carers UK, Young Dementia UK and Bradford District NHS Care Trust, it was a truly collaborative process involving carers at the forefront, describing their own needs based upon their personal experiences.
The result is a new measurement tool, called SIDECAR (Scales measuring the Impact of DEmentia on CARers). This truly co-designed questionnaire will help identify dementia carers who require support, and help ensure they are given the right support at the right team. In addition, the DECIDE research team has developed innovative ways of ‘valuing’ the quality of life of carers and people with dementia. This will go some way to informing health and social care providers about the economic (health) consequences of informal caring.