‘Name It to Tame It’: Dementia Diagnostic Procedure in Austrian Care Facilities for People With Intellectual Disabilities. An Interview Study

BACKGROUND: Despite 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. METHOD: We 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. RESULTS: In 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. CONCLUSIONS: To 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.