A pilot study of the reliability and validity of the Caregiver Activity Survey - Intellectual Disability (CAS-ID).
An eight-item caregiver survey gives a fast, reliable snapshot of how much daily help adults with Down syndrome need.
01Research in Context
What this study did
The team built a quick eight-item survey called the CAS-ID. Caregivers answer how long they spend helping an adult with Down syndrome do daily tasks.
They tested the survey twice with the same caregivers to see if answers stayed the same. They also checked if higher scores matched lower thinking and daily-living skills.
What they found
The survey gave steady numbers across raters and across weeks. High CAS-ID scores lined up well with low scores on standard memory and living-skills tests.
In short, the tool reliably shows how much hands-on care an adult now needs.
How this fits with other research
Pettingell et al. (2022) later bundled the CAS-ID into a big review of informant tools for dementia in intellectual disability. The review still lists it as useful, so the 2002 data hold up.
Hagopian et al. (2005) built on the same idea but shifted focus. Their CDS-ID does not clock minutes of care; it rates how hard caregiving feels. Together the two tools give both sides of the picture: time and stress.
La Face et al. (2026) found most staff never touch any survey, CAS-ID included. The gap is not science; it is practice.
Why it matters
You now have a one-page, eight-question scale that gives a number for daily-care load. Use it to spot slipping skills early, justify added hours, or show progress after training. Pair it with the CDS-ID if you also need to track caregiver stress.
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02At a glance
03Original abstract
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.
Journal of intellectual disability research : JIDR, 2002 · doi:10.1046/j.1365-2788.2002.00437.x