Detecting sleep apnea in adults with Down syndrome using WatchPAT: A feasibility study.

BACKGROUND: In daily practice, sleep apnea is underdiagnosed in people with Down syndrome. The WatchPAT can detect sleep apnea in a less invasive way. AIM: This study aimed to evaluate the feasibility of the WatchPAT to detect sleep apnea in individuals with Down syndrome. METHODS AND PROCEDURES: Thirty-one participants with Down syndrome (aged 18+) were included. Sleep apnea was detected with the WatchPAT and compared to results of the STOP-Bang Questionnaire (current practice). Experiences of participants, caregivers and clinicians were studied using a combination of quantitative and qualitative methods. OUTCOMES AND RESULTS: Among the 68% of participants who accepted the WatchPAT, sleep apnea was detected in 95% of participants. Younger participants and participants with mild/moderate intellectual disabilities were more likely to accept the device. STOP-Bang did not detect most cases of sleep apnea. For the degree of sleep apnea, interrater reliability was substantial (k = 0.71) to almost perfect (k = 0.91). Considering experiences, caregivers and clinicians were predominantly positive about the WatchPAT. CONCLUSIONS: Our study showed that the WatchPAT is a promising device to detect sleep apnea in people with Down syndrome. Compared to polysomnography, detection with this device is less invasive and less burdensome for people with Down syndrome. Furthermore, the WatchPAT is a relatively accessible solution to implement in care institutions.

The neglected puzzle of dementia in people with severe/profound intellectual disabilities: A systematic literature review of observable symptoms.

BACKGROUND: Dementia is increasingly prevalent in people with severe/profound intellectual disabilities. However, early detection and diagnosis of dementia is complex in this population. This study aimed to identify observable dementia symptoms in adults with severe/profound intellectual disabilities in available literature. METHOD: A systematic literature search was conducted in PubMed, PsycINFO and Web of Science with an exhaustive search string using a combination of search terms for severe/profound intellectual disabilities and dementia/ageing. RESULTS: Eleven studies met inclusion criteria. Cognitive decline, behavioural and psychological alterations, decline in activities of daily living as well as neurological and physical changes were found. CONCLUSIONS: Only a very limited number of studies reported symptoms ascribed to dementia in adults with severe/profound intellectual disabilities. Given the complexity of signalling and diagnosing dementia, dedicated studies are required to unravel the natural history of dementia in this population.

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

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.

The Behavioral and Psychological Symptoms of Dementia in Down Syndrome Scale (BPSD-DS II): Optimization and Further Validation.

BACKGROUND: People with Down syndrome (DS) are at high risk to develop Alzheimer's disease dementia (AD). Behavioral and psychological symptoms of dementia (BPSD) are common and may also serve as early signals for dementia. However, comprehensive evaluation scales for BPSD, adapted to DS, are lacking. Therefore, we previously developed the BPSD-DS scale to identify behavioral changes between the last six months and pre-existing life-long characteristic behavior. OBJECTIVE: To optimize and further study the scale (discriminative ability and reliability) in a large representative DS study population. METHODS: Optimization was based on item irrelevance and clinical experiences obtained in the initial study. Using the shortened and refined BPSD-DS II, informant interviews were conducted to evaluate 524 individuals with DS grouped according to dementia status: no dementia (DS, N = 292), questionable dementia (DS + Q, N = 119), and clinically diagnosed dementia (DS + AD, N = 113). RESULTS: Comparing item change scores between groups revealed prominent changes in frequency and severity for anxious, sleep-related, irritable, restless/stereotypic, apathetic, depressive, and eating/drinking behavior. For most items, the proportion of individuals displaying an increased frequency was highest in DS + AD, intermediate in DS + Q, and lowest in DS. For various items within sections about anxious, sleep-related, irritable, apathetic, and depressive behaviors, the proportion of individuals showing an increased frequency was already substantial in DS + Q, suggesting that these changes may serve as early signals of AD in DS. Reliability data were promising. CONCLUSION: The optimized scale yields largely similar results as obtained with the initial version. Systematically evaluating BPSD in DS may increase understanding of changes among caregivers and (timely) adaptation of care/treatment.