Informant-based assessment instruments for dementia in people with intellectual disability: A systematic review and standardised evaluation.
Use BPSD-DS, CS-DS, or DSQIID for quick dementia screens and CAMDEX-DS for full assessment in adults with ID.
01Research in Context
What this study did
Pettingell et al. (2022) hunted for the best caregiver-report tools to spot dementia in adults with intellectual disability. They screened every paper ever written on the topic and graded each tool with COSMIN rules. The review covers quick screeners and full batteries used by staff, family, or paid carers.
What they found
Three short screeners came out on top: BPSD-DS, CS-DS, and DSQIID. For a deep dive they recommend CAMDEX-DS. All four tools already existed, but no single study had lined them up side-by-side before.
How this fits with other research
Hermans et al. (2010) did the same kind of review for depression, not dementia. They also picked caregiver tools, showing the method works across conditions.
McCarron et al. (2002) gave early proof that an 8-item caregiver scale can track daily-life decline in Down syndrome plus dementia. L et al. fold that same CAS-ID into their bigger map.
La Face et al. (2026) interviewed Austrian staff and found most still skip formal tools. The 2022 review gives those staff the exact short forms they are missing.
Why it matters
If you support adults with ID, you now have a vetted menu. Start with BPSD-DS or CS-DS for quick red flags. Move to CAMDEX-DS when you need detail. No more guessing which form to grab off the shelf.
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02At a glance
03Original abstract
BACKGROUND: Dementia in people with intellectual disability (ID) is frequent but hard to recognise. Evidence-based recommendations for suitable instruments are lacking. AIMS: The present study set out to evaluate informant-based dementia assessment instruments and to provide evidence-based recommendations for instruments most suitable in clinical practice and research. METHOD AND PROCEDURES: A systematic review was conducted across ten international electronic databases. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines, including a risk of bias assessment, was applied to extract information and to evaluate measurement properties and the quality of available evidence. OUTCOMES AND RESULTS: In total, 42 studies evaluating 18 informant-based assessment instruments were analysed. For screening purposes, we recommend the Behavioral and Psychological Symptoms of Dementia in Down Syndrome Scale (BPSD-DS), the Cognitive Scale for Down Syndrome (CS-DS), and the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID). For a more thorough dementia assessment, we recommend the Cambridge Examination for Mental Disorders of Older People with Down's Syndrome and Others with Intellectual Disabilities (CAMDEX-DS). CONCLUSIONS AND IMPLICATIONS: Our study informs clinicians and researchers about adequate, well-evaluated dementia assessment instruments for people with ID, and highlights the need for high quality studies, especially regarding content validity.
Research in developmental disabilities, 2022 · doi:10.1016/j.ridd.2021.104148