Development of a Caregiver Burden Questionnaire for the Patients with Dementia in Iran

Objectives: The purpose of this study was to design a valid questionnaire suitable to the Iranian culture to measure the stress mounted on dementia caregivers. Methods: In order to design a valid and reliable tool, the stages of content validation were performed as follows: 1- Development: search of relevant electronic databanks and use of experts and caregivers’ opinions to prepare appropriate content, review and correction of the content through consecutive focus group discussions with experts. 2- Judgment Quantification: determination of inter-rater agreement (IRA), relevancy and clarity of each of the items and the tool as a whole. Reliability was measured with Cronbach’s alpha, and repeatability was measured with intracluster correlation through repeated test-piloting at 2-3 week intervals. Results: Using a conservative approach, the IRA for the overall relevancy and clarity of the tool was 87.87% and 81.81%, respectively. Through overall agreement (the items that were recognized as appropriate by 100% of the specialists were divided by the total number of items) the overall relevancy of the tool obtained was 98.62%. The overall clarity of the tool was calculated through the mean clarity of the questions and was 99.3%, and eventually its comprehensiveness was 100%. The overall Cronbach’s alpha was 94% and the intra-cluster correlation that was obtained through comparing the overall score of the questionnaire in the pre-test and test phase was 97%. Conclusions: The new tool has good reliability and validity suitable to Iranian dementia patients and their caregivers’ culture. Researchers can use this tool to monitor the pressure mounted on dementia caregivers and to assess interventions in this group.