Decide logoThe number of people living with dementia in the UK is rising. Friends and family provide much of the care. Maintaining carer quality of life and finding a way of assessing it are important for the carers, those cared for, and for society. There are existing questionnaires used for dementia carer assessment but how good they are for this purpose has been questioned. The DECIDE study is looking to develop a new assessment to help improve the lives of carers.

We caught up with Dr Penny Wright, Chief Investigator for this study, to find out more:

What are the main aims of the study?

This research aims to develop a new questionnaire for use in routine supportive care, in research and potentially in health and social care evaluation. In the first part of the research we interviewed over 40 carers and asked them about their experiences of caring and what it meant for them. We focused on the underlying needs of the carers. From these interviews, and using the actual words of the carers as much as possible, we created a pool of 81 questions. In this phase of the work we are testing how good these questions are at really picking up reliably and meaningfully the quality of life of carers. We will do this by asking more than 400 carers to complete the new questions, two other short questionnaires and some questions about themselves and the person they care for.

What does it involve for a participant?

Carers will be asked to complete:
1. Two short questionnaires featuring the new questions on health and well-being and some questions about themselves (about 20-30 minutes to complete) at the time that they agree to take part in the study;
2. two to four weeks later the new questions again (checking reliability) ;
3. and for some at six months all the questions again (checking sensitivity to changes).
The questionnaires are on paper and are posted back to the clinical trials unit at the University of Bangor.

Dr Penny Wright, Chief Investigator for the DECIDE study

Dr Penny Wright, Chief Investigator for the DECIDE study

How long is the study for?

There are three time points for carers to complete the questionnaires lasting over a six month period.

What do you hope the outcomes of the study will be?

Carer responses will be analysed to produce a reliable and valid bank of questions measuring carer quality of life and a brief quality of life questionnaire. These will be available for services (health, social care, voluntary) and researcher to use free of charge. We hope the questionnaire will be useful for individual carer assessment and for evaluating services, including health economic valuation.

Where is the study based?

The study is organised by a research team based at the University of Leeds. Staff from 23 Health Trusts from across England and Wales are recruiting carers to the study.

Who can take part?

Carers can take part if they are caring for someone who is living in one of the areas covered by the 23 Health Trusts. The carer must be caring for someone who has dementia and who is living in the community (e.g. not living in a residential home or a nursing home). The carer must be at least 16 years old, be able to read and understand English and have the capacity to understand what the research is about.