A systematic literature review of observable symptoms

Background: Life expectancy of people with severe or profound intellectual disability increases, which contributes to the risk of developing dementia. However, early detection and diagnosing dementia is complex, because of their low-level baseline functioning. Therefore, the aim is to identify observable dementia symptoms in adults with severe or profound intellectual disability in available literature. Method: A systematic literature search, in line with PRISMA guidelines, was conducted in PubMed, PsycINFO and Web of Science using a combination of search terms for severe or profound intellectual disability, dementia/aging and aged population. Results: In total, fifteen studies met inclusion criteria. Cognitive, behavioral and psychological symptoms (BPSD) and a decline in the ability to perform activities of daily living as well as neurological and physical changes were found. This presentation gives an overview of reported symptoms of (possible) dementia-related symptoms in severe or profound intellectual disability. Conclusions: Despite growing attention for dementia in people with intellectual disabilities in literature, only very few studies have studied dementia symptoms in severe or profound intellectual disability. Given the complexity of signaling and diagnosing dementia in SPID, dedicated studies are required to unravel the natural history of dementia in severe or profound intellectual disability, specifically focusing on observable symptoms for caregivers of (early) dementia in this population.