Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs.

Differentiating dementia from baseline level of functioning is difficult among people with severe/profound intellectual (and multiple) disabilities. Moreover, studies on observable dementia symptoms are scarce. This study examined (a) the relevance of dementia diagnosis, (b) observable symptoms and (c) training/ information needs. Four explorative focus groups were held with care professionals and family members who have experience with people with severe/profound intellectual (and multiple) disabilities (≥40 years) and decline/dementia. Thematic analysis showed that participants wanted to know about a dementia diagnosis for a better understanding and to be able to make informed choices (question 1). Using a categorization matrix, cognitive and behavioral changes were shown to be most prominent (question 2). Participants indicated that they needed enhanced training, more knowledge development and translation, and supportive organizational choices/policies (question 3). Timely identifying/diagnosing dementia allows for a timely response to changing needs. This requires a better understanding of symptoms.

Source: Dekker, A.D., Wissing, M.B.G., Ulgiati, A.M., Bijl, B., van Gool, G., Groen, M.R., Grootendorst, E.S., van der Wal, I.A., Hobbelen, J.S.M., De Deyn, P.P., & Waninge, A. Dementia in people with severe or profound intellectual (and multiple) disabilities: Focus group research into relevance, symptoms and training needs. Journal of Applied Research in Intellectual Disability, 2021 Nov, 34(6), 1602-1617. https://doi.org/10.1111/jar.12912