Abstract
BackgroundThere is a lack of validated instruments to measure the level of burden of Alzheimer’s disease (AD) on caregivers. The Impact of Alzheimer’s Disease on Caregiver Questionnaire (IADCQ) is a 12-item instrument with a seven-day recall period that measures AD caregiver’s burden across emotional, physical, social, financial, sleep, and time aspects. Primary objectives of this study were to evaluate psychometric properties of IADCQ administered on the Web and to determine most appropriate scoring algorithm.MethodsA national sample of 200 unpaid AD caregivers participated in this study by completing the Web-based version of IADCQ and Short Form-12 Health Survey Version 2 (SF-12v2™). The SF-12v2 was used to measure convergent validity of IADCQ scores and to provide an understanding of the overall health-related quality of life of sampled AD caregivers.The IADCQ survey was also completed four weeks later by a randomly selected subgroup of 50 participants to assess test-retest reliability. Confirmatory factor analysis (CFA) was implemented to test the dimensionality of the IADCQ items. Classical item-level and scale-level psychometric analyses were conducted to estimate psychometric characteristics of the instrument. Test-retest reliability was performed to evaluate the instrument’s stability and consistency over time.ResultsVirtually none (2%) of the respondents had either floor or ceiling effects, indicating the IADCQ covers an ideal range of burden. A single-factor model obtained appropriate goodness of fit and provided evidence that a simple sum score of the 12 items of IADCQ can be used to measure AD caregiver’s burden. Scales-level reliability was supported with a coefficient alpha of 0.93 and an intra-class correlation coefficient (for test-retest reliability) of 0.68 (95% CI: 0.50–0.80). Low-moderate negative correlations were observed between the IADCQ and scales of the SF-12v2.ConclusionsThe study findings suggest the IADCQ has appropriate psychometric characteristics as a unidimensional, Web-based measure of AD caregiver burden and is supported by strong model fit statistics from CFA, high degree of item-level reliability, good internal consistency, moderate test-retest reliability, and moderate convergent validity. Additional validation of the IADCQ is warranted to ensure invariance between the paper-based and Web-based administration and to determine an appropriate responder definition.
Highlights
There is a lack of validated instruments to measure the level of burden of Alzheimer’s disease (AD) on caregivers
The study findings demonstrate that the Impact of Alzheimer’s Disease on Caregiver Questionnaire (IADCQ) can be used to measure the burden of AD caregiving and that the concepts measured in the IADCQ represent a cohesive concept of caregiver burden
In summary, this research supports the use of the Webbased IADCQ to measure the burden impact on caregivers of AD patients and justifies a single total-score interpretation
Summary
There is a lack of validated instruments to measure the level of burden of Alzheimer’s disease (AD) on caregivers. In the 2010 World Alzheimer Report, a systematic review of the world literature on the demands of caregiving looked at 10 studies where time spent assisting with basic ADLs was quantified covering 25 countries; 13 studies of time spent in generally supervising the person with dementia covering 25 countries; and 42 studies of time spent assisting with basic ADLs and instrumental activities of daily living (IADLs) combined spanning 30 countries. The report suggested that caregivers spend an average of 2.0 hours daily supporting basic ADLs, 3.6 hours with basic ADLs and IADLs combined, and 2.6 hours supervising the person with dementia. Caregivers provide 80% of home care to AD patients with the level of caregiver burden related to the extent of the patient’s cognitive impairment and functional abilities [5,6]. Caregivers provided an average of 21.9 hours of care per week [6]
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