Background: Dysphagia is potentially life‐threatening and highly prevalent in people with severe/profound intellectual and multiple disabilities (SPIMD). The “Signaleringslijst Verslikken” (SV) is a frequently used Dutch screening tool to detect dysphagia. The aim was to examine the convergent validity of the SV for people with SPIMD. Method: Direct support staff completed the SV, with speech and language therapists scoring a validated tool, the Dysphagia Disorders Survey (DDS), for 41 persons with SPIMD, aged ≥50 years. The results were compared for agreement using the McNemar's Test. Results: The proportion of agreement was 0.59 (95% CI 0.43–0.72). The SV did not detect dysphagia in 17 participants (44%) who were assessed as having dysphagia according to the DDS. The difference in proportion of detection of dysphagia between the two methods was significant (p < 0.0001). Conclusions: The results suggest that the convergent validity of the SV is insufficient: the SV is not sensitive for detecting dysphagia in people with SPIMD.
IntroductionAlthough the prevalence of dementia increases among people with severe/profound intellectual (and multiple) disabilities (SPI(M)D), dementia in people with SPI(M)D is not yet fully understood. Therefore, this study aimed to characterize the natural history of dementia in people with SPI(M)D, in particular, the prevalence and time of onset of dementia symptoms.MethodsAn explorative retrospective review of clinical records was conducted for people with SPI(M)D without dementia (n = 103), with questionable dementia (n = 19), and with diagnosed dementia (n = 19). Presence and time of onset of symptoms were extracted and compared between groups.ResultsPeople with questionable dementia or diagnosed dementia had compared to people without dementia more symptoms regarding the cognitive, activities of daily living, behavioral/psychological, and motor domains. The most prevalent early symptoms were memory loss, declined walking skills, increased anxious, apathetic, and irritable behavior. Predictors for dementia were the number of cognitive, behavioral/psychological, and motor symptoms.ConclusionThese results contribute to enhance our understanding of dementia in people with SPI(M)D, which is essential for earlier recognizing and diagnosing dementia.
BACKGROUND: 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.METHODS: 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.RESULTS: 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 categorisation matrix, cognitive and behavioural changes were shown to be most prominent (question 2). Participants indicated that they needed enhanced training, more knowledge development and translation, and supportive organisational choices/policies (question 3).CONCLUSIONS: Timely identifying/diagnosing dementia allows for a timely response to changing needs. This requires a better understanding of symptoms.
