The number of people living in the United Kingdom (UK) with dementia is rising. People with dementia, society, and health/social care agencies are reliant upon informal carers, such as friends and family, to provide care and support.  In 2015 the number of UK primary informal carers for people with dementia was estimated at more than 670,000.

Having a caring role can have a huge impact on well-being, quality of life, and finances, yet without these informal carers people with dementia would be dependent upon health and social care services and government costs would be increased greatly. It is important therefore that we find a way of measuring the quality of life of carers so that we can provide them with the right support at the right time. DECIDE (Dementia Carers Instrument Development), is a new research project, which aims to develop a new questionnaire to measure the quality of life of people caring for someone living with dementia.

This website will provide up to date information about the DECIDE project, as well as useful links to the many organisations that are supporting it. It is hoped that the results will help provide an easy and accurate way of assessing the needs and quality of life of carers of people with dementia, and to help to identify carers most at need, as well as informing decision making concerning government spending.

STUDY UPDATE and launch of sidecar

We have now completed the study and are writing up the final results.  The questionnaire is called SIDECAR (Scales measuring the Impact of DEmentia on CARers).  To access SIDECAR please click here.