Dementia in people with severe/profound intellectual disabilities

In people with severe or profound intellectual disabilities, it is difficult to diagnose dementia. As timely identification and diagnosis of dementia allows for a timely response to changing client wishes and needs, this study examined symptoms, and diagnosis of dementia in practice. Family members and professionals were invited to fill out survey about symptoms and diagnosis of dementia in people with severe or profound intellectual disabilities. Results of the survey were further explored within semi-structured interviews with professionals having experience with signaling and diagnosing dementia in these people. Symptoms found in the survey and transcripts of the interviews were qualitatively analyzed, using thematic analyses based on a developed symptom-matrix. The survey was filled out completely by 14 family members and 90 professionals with different backgrounds. Results showed that behavioral changes were recognized more frequently than cognitive decline. Compared to those without dementia, epilepsy and motor decline were more present in case of dementia. Fifteen interviews (until saturation) with professionals provided an in-depth view into the symptoms, and how to identify them, again stressing behavioral alterations and to a lesser extent cognitive symptoms.

Source: Waninge, A., Wissing, M., Hobbelen, H., Fokkens, A., Dekker, A., & De Deyn, P. Dementia in people with severe/profound intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 2021, 34(5), 1214-1215. https://doi.org/10.1111/jar.12917