Dementia Carers Instrument Development (DECIDE) – data introduction

Publication Summary

The number of people living in the United Kingdom (UK) with dementia is rising. Having a caring role can have a huge impact on well-being, quality of life, and finances, yet without  support from informal carers, people with dementia would be dependent upon health and social care services, and government costs would be increased greatly. In 2015 the University of Leeds was awarded funding by the Medical Research Council and the National Institute for Health Research to carry out a three year project to develop a new questionnaire for measuring the quality of lives of individuals caring for someone with dementia. The study, called DECIDE (Dementia Carers Instrument Development) was led by the University of Leeds, alongside researchers from universities across the England and Wales. The measure, SIDECAR (Scales  measuring the Impact of DEmentia on CARers) will be brief and easy to complete making it useful in individual carer assessment as well as being used to inform service planning and potentially in service valuation. The project was undertaken in two stages. Stage one: A carer interview study to investigate the fundamental human needs of carers and using this information to develop potential items for SIDECAR (qualitative data). Stage two: Asking carers from across England and Wales to complete the items generated from stage one on three occasions along with other questionnaires and sociodemeographic information (quantitative data). These data were used to develop and evaluate the psychometric properties of SIDECAR. The data used to develop the questionnaire will be available to researchers until September 2023 . The quantitative and qualitative data are available through "Related resources" below. The quantitative data is openly available through DOI http://doi.org/10.5518/432. The qualitative data is available through DOI http://doi.org/10.5518/375 which will provide a summary and a link to request access.