Dementia in people with severe/profound intellectual (and multiple) disabilities: practice-based observations of symptoms

Observable dementia symptoms are hardly studied in people with severe/profound intellectual (and multiple) disabilities (SPI(M)D). Insight in symptomatology is needed for timely signaling/diagnosis. This study aimed to identify practice-based observations of dementia symptoms in this population.
Care professionals and family members were invited to complete a survey about symptoms. Quantitatively analyzed survey data were further deepened through semi-structured interviews with care professionals having vast experience in signaling/diagnosing dementia in this population. Symptoms were categorized using a symptom matrix. Survey respondents and interviewees frequently observed a decline in activities of daily living (ADL) functioning and behavioral and psychological changes, like increased irritability, anxiety, apathy, and decreased eating/drinking behavior. Cognitive symptoms were particularly recognized in persons with verbal communication and/or walking skills. To a lesser extent motor changes and medical comorbidities were reported. Increased insight in dementia symptoms contributes to developing a dedicated screening instrument for dementia in people with SPI(M)D.

Source: Wissing, M.B.G., Fokkens, A.S., Dijkstra, R., Hobbelen, J.S. M., van der Putten, A.A.J., De Deyn, P.P., Waninge, A., & Dekker, A.D. Dementia in people with severe/profound intellectual (and multiple) disabilities: practice-based observations of symptoms. Journal of Mental Health Research in Intellectual Disabilities, 2022, 15(4), 364-393. https://doi.org/10.1080/19315864.2022.2061092