Dementia Carers Instrument Development:DECIDE Psychometric evaluation
Research type
Research Study
Full title
Dementia Carers Instrument Development: DECIDE Phase 3: Psychometric evaluation
IRAS ID
212611
Contact name
Penny Wright
Contact email
Sponsor organisation
University of Leeds
Duration of Study in the UK
1 years, 3 months, 4 days
Research summary
DECIDE: Dementia Carer Instrument Development
The 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.
This research aims to develop a new questionnaire for use in in routine supportive care, in research and potentially in health and social care evaluation. In the first part of the research we created a pool of 81 questions directly from what carers told us. In this study we will test 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.
We will recruit carers to the study from NHS, Social Care and Voluntary services across England and Wales, from “Join Dementia Research” and from the final stage of another ongoing study of carers. Carers can take part if they are looking after someone with dementia who is NOT living in a care home, they can read English and are at least sixteen years old.
Carers will be asked to complete at consent: the new questions, two short questionnaires on health and well-being and some questions about themselves (about 20-30 minutes to complete); two to four weeks later the new questions again (checking reliability); and for some at six months all the questions again (checking sensitivity to changes).
Recruitment of carers will last for sixteen months. Carer responses will be analysed to produce a reliable and valid bank of questions measuring carer quality of life and a short-form questionnaire.REC name
South West - Cornwall & Plymouth Research Ethics Committee
REC reference
16/SW/0280
Date of REC Opinion
23 Sep 2016
REC opinion
Further Information Favourable Opinion