Measurement of quality of life in carers of people with dementia
Research type
Research Study
Full title
C-DEMQOL- Measurement of quality of life in family carers of people with dementia: development of a new instrument for evaluation
IRAS ID
187558
Contact name
Sube Banerjee
Contact email
Duration of Study in the UK
2 years, 5 months, 31 days
Research summary
Dementia is one of the most common and serious disorders we face. In the UK there are over 800,000 people with dementia, costing £23 billion pa. It causes irreversible decline in global intellectual, social and physical functioning. Abnormalities in behaviour, insight and judgement, psychosis, anxiety and depression are all part of the disorder. The National Dementia Strategy (NDS) identifies family carers as “the most valuable resource for people with dementia”. 600,000 family carers provide £8 billion pa of unpaid dementia care in the UK. Family carers are a vital determinant of QOL and positive outcomes for people with dementia, having a co-resident carer exerts a 20-fold protective effect on risk of institutionalisation. It is important to measure the impact of caring for a person with dementia on family carers of people with dementia. This is often measured by considering depression, anxiety, burden, or the hassles and rewards of caring and there are instruments to do this. There are however no sufficiently well-developed measures of the overall effect (quality of life) specifically of caring for someone with dementia and therefore the impact of any intervention. This project aims to develop the first such instrument (C-DEMQOL) to measure quality of life in family carers of people with dementia so that we can evaluate their state and outcomes in descriptive and intervention studies, and in health and social care services. We will do this by using a sequential seven-stage process. Development will begin with input from family carers and professional key informants and end with testing the C-DEMQOL in a large sample of family carers.
REC name
South Central - Hampshire A Research Ethics Committee
REC reference
15/SC/0605
Date of REC Opinion
5 Nov 2015
REC opinion
Further Information Favourable Opinion