Measuring the quality of life of family carers of people with dementia: development and validation of C-DEMQOL

Abstract

Purpose We aimed to address gaps identifed in the evidence base and instruments available to measure the quality of life (QOL) of family carers of people with dementia, and develop a new brief, reliable, condition-specifc instrument. Methods We generated measurable domains and indicators of carer QOL from systematic literature reviews and qualitative interviews with 32 family carers and 9 support staf, and two focus groups with 6 carers and 5 staf. Statements with fve tailored response options, presenting variation on the QOL continuum, were piloted (n=25), pre-tested (n=122) and feldtested (n=300) in individual interviews with family carers from North London and Sussex. The best 30 questions formed the C-DEMQOL questionnaire, which was evaluated for usability, face and construct validity, reliability and convergent/ discriminant validity using a range of validation measures. Results C-DEMQOL was received positively by the carers. Factor analysis confrmed that C-DEMQOL sum scores are reliable in measuring overall QOL (ω=0.97) and its fve subdomains: ‘meeting personal needs’ (ω=0.95); ‘carer wellbeing’ (ω=0.91); ‘carer-patient relationship’ (ω=0.82); ‘confdence in the future’ (ω=0.90) and ‘feeling supported’ (ω=0.85). The overall QOL and domain scores show the expected pattern of convergent and discriminant relationships with established measures of carer mental health, activities and dementia severity and symptoms. Conclusions The robust psychometric properties support the use of C-DEMQOL in evaluation of overall and domain-specifc carer QOL; replications in independent samples and studies of responsiveness would be of value