Background: People with Down's syndrome (DS) are at increased risk of Alzheimer-type dementia (AD) when compared to the general population. Despite AD being a serious progressive disorder, little attention has been paid to the impact of the illness on formal caregivers. In the general population, the Caregiver Activity Survey (CAS) is used to measure time spent by family caregivers assisting people with AD in their day-to-day activities of living. In order to plan appropriate models of health and social care effectively for people with AD and DS, it is imperative that the care requirements of individuals at different stages of dementia are realized. An amended version of this survey, the Caregiver Activity Survey - Intellectual Disability (CAS-ID), was developed and tested for use by professional caregivers in the present study.
Methods: The CAS-ID was administered to 30 people with DS and their caregivers. Convergent validity was tested by comparing the results of the CAS-ID to other validated tests for cognitive and functional impairment in individuals with DS. Test-retest and inter-rater reliability were investigated.
Results: The final version of the CAS-ID consists of eight items: dressing, bathing/showering, grooming, toileting, eating and drinking, housekeeping, nursing care-related activities, and supervision/ behaviour management. The scale had excellent test-retest reliability, and correlated strongly with the Down Syndrome Mental Status Examination (DSMSE; r = -0.770), the Test for Severe Impairment (TSI; r = -0.881) and the Daily Living Skills Questionnaire (DLSQ; r = -0.855).
Conclusions: The present authors provide preliminary evidence for the validity and reliability of the CAS-ID. This instrument offers a means of identifying and measuring care and resources requirements as this population experiences symptoms of dementia. Such information may help assist healthcare professionals in planning supports and services to address the care challenges evidenced at different stages of the disease process.