Validation of the Danish version of the Carer Experience Scale in family caregivers of people with dementia

Abstract Background The Carer Experience Scale (CES) measures the caring experience, focusing on caregiver-related quality of life (QoL) rather than health-related QoL. We aimed to validate the Danish language version of CES in family caregivers of people with dementia in Denmark by assessing CES discriminative and convergent validity. Further, we aimed to establish the internal consistency and test-retest reliability of CES. Methods A baseline questionnaire from the Danish DemTool intervention trial, including CES and five other measures of QoL and wellbeing was completed by 375 family caregivers of people with dementia. Discriminative validity was assessed by the ability of CES to discriminate between different caring contexts and levels of caregiver strain, as determined by Mann–Whitney U and Kruskal–Wallis H tests. Convergent validity was assessed by analyzing correlations using Spearman’s rank correlation coefficients between the CES index and domain scores, and the 5-level EQ-5D version (EQ-5D-5L), European Quality of life visual analog scale (EQ VAS), Neuropsychiatric Inventory Caregiver Distress Scale (NPI-D), World Health Organization Wellbeing Index (WHO-5), and the University of California, Los Angeles Three-Item Loneliness Scale (UCLA 3-item). Internal consistency was assessed using Cronbach’s α and test-retest reliability was assessed using intraclass correlation coefficient (ICC) between two different time points. Results The CES effectively distinguished between different levels of caregiver strain. Further, the CES was not affected by different caregiver and care recipient characteristics. Supporting convergent validity, the CES index was moderately correlated with NPI-D (ρ=-0.42), WHO-5 (ρ = 0.44), and UCLA 3-item (ρ=-0.40). The CES index was weakly correlated with EQ-5D-5L (ρ = 0.27), and EQ-VAS (ρ = 0.26). The CES showed low internal consistency (α = 0.53), but high test-retest reliability (ICC = 0.76). Conclusion The Danish version of CES demonstrated discriminative validity and acceptable psychometric properties, providing further evidence for its use in family caregivers of people with dementia.