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Project Title: Dementia Carers Instrument Development

Project start date: July 2015

Anticipated end date: June 2018

Funding: Medical Research Council


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.  Taking on a carer 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, which would greatly increase government costs.  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.

Aims and Objectives

DECIDE (Dementia Carers Instrument Development) is a new research project, which aims to develop a new questionnaire to measure the ways in which caring for someone living with dementia impacts on the needs and quality of life of the carer.  Through the DECIDE project we will improve our understanding of the needs of carers.  Using this knowledge we will develop a new reliable and valid measure, which can be used to assess the needs of carers of people with dementia who are living in the community, including those in sheltered or extra-care housing.

Research team

The study involves a highly experienced group with diverse backgrounds and complimentary skills.  The study also brings together researchers from five leading universities, led by the host research organisation, the University of Leeds.


A measure that 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 evaluation.

Principal Investigator: Dr Penny Wright (University of Leeds)


  • Professor Janet R Oyebode (University of Bradford)
  • Professor Carole Brayne (University of Cambridge)
  • Dr Hareth Al-Janabi (University of Birmingham)
  • Professor Paul Kind (University of Leeds)
  • Professor Alan Tennant (University of Leeds)
  • Professor Linda Clare (Bangor University)
  • Dr Zoe Hoare (Bangor University)

For further information about this project please contact :

Dr Penny Wright, tel 0113 2068488,

How to Access SIDECAR

You can access SIDECAR through the University of Leeds fast licensing platform.  The link is as follows:

Type ‘SIDECAR’ into the search box and you will be taken to the page.