«Dementia doesn’t stand still. If you miss it, it’s too late.» early recognition of dementia’s signs in people with intellectual disabilities: A qualitative study with formal caregivers in Austria

Caregivers play a fundamental role in the diagnostic process of dementia in people with intellectual disabilities. However, in many countries they receive no specific training on observing early dementia symptoms. This study investigates which signs formal caregivers interpret as dementia symptoms in people with intellectual disabilities. Thirty semi-structured interviews were conducted with formal caregivers to collect comprehensive reports of their observations regarding dementia signs. Neuropsychological labels were systematically applied to the reported signs, and frequencies were analysed to identify recognition patterns. Results revealed which signs of dementia were most easily observed by formal caregivers and which were most likely overlooked. Cognitive changes were reported more frequently than emotional, body and neurovegetative changes, with most observations occurring during basic care activities. The results emphasise the importance of training on dementia for care professionals when working with older people with intellectual disabilities, in order to improve early detection.