Informant-based assessment instruments for dementia in people with intellectual disability: A systematic review and standardised evaluation
- Author(s)
- Elisabeth Zeilinger, Irina Zrnic Novakovic, Sophie Komenda, Fabian Franken, Marc Sobisch, Anna-Maria Mayer, Lennart Neumann, Sandra Loosli, Sarah Hoare, Jakob Pietschnig
- 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.- Organisation(s)
- Department of Clinical and Health Psychology, Department of Developmental and Educational Psychology
- External organisation(s)
- Medizinische Universität Wien, Psychologische Hochschule Berlin, Universität Duisburg-Essen, Ludwig-Maximilians-Universität München, NELFT NHS Foundation Trust Goodmayes Hospital
- Journal
- Research in Developmental Disabilities
- Volume
- 121
- No. of pages
- 15
- ISSN
- 0891-4222
- DOI
- https://doi.org/10.1016/j.ridd.2021.104148
- Publication date
- 12-2021
- Peer reviewed
- Yes
- Austrian Fields of Science 2012
- 501010 Clinical psychology
- Keywords
- ASJC Scopus subject areas
- Clinical Psychology, Developmental and Educational Psychology
- Portal url
- https://ucrisportal.univie.ac.at/en/publications/informantbased-assessment-instruments-for-dementia-in-people-with-intellectual-disability-a-systematic-review-and-standardised-evaluation(7d354791-5f9e-4741-a928-c6a4e1715c8f).html