‘Name It to Tame It’: Dementia Diagnostic Procedure in Austrian Care Facilities for People With Intellectual Disabilities. An Interview Study
Journal of Intellectual Disability Research / Journal of intellectual disability research JIDR
Published online on April 09, 2026
Abstract
["Journal of Intellectual Disability Research, Volume 70, Issue 5, Page 481-490, May 2026. ", "\nABSTRACT\n\nBackground\nDespite the growing relevance of dementia in people with intellectual disabilities, there are currently no national recommendations in Austria to inform diagnostic protocols within care facilities. In order to gain a state‐of‐the‐art understanding of the issue, the aim of this study was to map out the process currently followed by formal caregivers when they suspect a person in their care has dementia.\n\n\nMethod\nWe conducted 30 interviews with formal caregivers working in three care facilities for people with intellectual disabilities in Styria, an Austrian province. The interviews were transcribed and analysed using structured qualitative content analysis.\n\n\nResults\nIn order to notice signs of early dementia and start the diagnostic process, a long‐term relationship between formal caregivers and the person with intellectual disabilities appears to be crucial. Standardised observational instruments for monitoring changes were used by only three formal caregivers. In 19 out of 30 cases, no diagnostic assessment was carried out, even though dementia was suspected.\n\n\nConclusions\nTo uphold the right to health for older adults with intellectual disabilities, policies and recommendations must be established in Austria to ensure timely and accurate dementia diagnoses. This requires the introduction of standardised observational and documentation tools, clear diagnostic pathways and specialist diagnostic centres.\n\n"]