Sleep-wake monitoring of people with intellectual disability: Examining the agreement of EMFIT QS and actigraphy.

BACKGROUND: Gaining insight into sleep-wake patterns of persons with intellectual disabilities is commonly done using wrist actigraphy. For some people, contactless alternatives are needed. This study compares a contactless bed sensor with wrist actigraphy to monitor sleep-wake patterns of people with moderate to profound intellectual disabilities. METHOD: Data were collected with EMFIT QS (activity and presence) and MotionWatch 8/Actiwatch 2 (activity, ambient light, and event marker/sleep diary) for 14 nights in 13 adults with moderate-profound intellectual disabilities residing in intramural care. RESULTS: In a care-as-usual setting, EMFIT QS and actigraphy assessment show little agreement on sleep-wake variables. CONCLUSION: Currently, EMFIT QS should not be considered an alternative to wrist actigraphy for sleep-wake monitoring. Further research is needed into assessing sleep-wake variables using (contactless) technological devices and how the data should be interpreted within the care context to achieve reliable and valid information on sleep-wake patterns of people with intellectual disabilities.

Long time polysomnographic sleep and breathing evaluations in children with CDKL5 deficiency disorder.

STUDY OBJECTIVES: CDKL5 deficiency disorder (CDD) is a rare developmental and epileptic encephalopathy, developing in the first months of life, caused by a mutation in the cyclin-dependent kinase-like 5 (CDKL5) gene. Children with CDD often have sleep (90%) and breathing disorders in wake (50%). Sleep disorders may have a significant impact emotional wellbeing and quality of life of caregivers of children with CDD and are challenging to treat. The outcomes of these features are unknown in children with CDD. METHODS: We retrospectively evaluated sleep and respiratory function changes over 5-10 years in a small cohort of Dutch children with CDD, using video-EEG and/or polysomnography (3 × 24 h) and a parental questionnaire, the Sleep Disturbance Scale for Children (SDSC). The present study is a follow-up sleep and PSG study to evaluate if sleep and breathing disturbances persist in children with CDD previously studied. RESULTS: Sleep disturbances persisted during the study period (5.5-10 years). All five individuals had long sleep latency (SL, range 32-174.5 min) and frequent arousals and awakenings (14-50/night), unrelated to apneas/seizures, corresponding to the SDSC findings. Low sleep efficiency (SE, 41-80%) was present and did not improve. In our participants, total sleep time (TST, 3h52min-7h52min) was short and remained so. Time in bed (TIB) was typical for children aged 2-8 years, but did not adjust with ageing. Low duration (4.8-17.4%) or even absent REM sleep persisted over time. No sleep apneas were noted. Central apneas due to episodic hyperventilation were reported during wakefulness in two of the five. CONCLUSION: Sleep disturbances were present and persisted in all. The decreased REM sleep and sporadic breathing disturbances in wake may indicate failure of brainstem nuclei. Sleep disturbances can severely affect the emotional wellbeing and quality of life of the caregivers and the individuals with CDD and are challenging to treat. Hopefully our polysomnographic sleep data contribute to find the optimal treatment of the sleep problems in CDD patients.

Individual differences in the temporal relationship between sleep and agitation: a single-subject study in nursing home residents with dementia experiencing sleep disturbance and agitation.

OBJECTIVES: Previous studies on the interrelationship between sleep and agitation relied on group-aggregates and so results may not be applicable to individuals. This proof-of-concept study presents the single-subject study design with time series analysis as a method to evaluate the association between sleep and agitation in individual nursing home residents using actigraphy. METHOD: To record activity, three women and two men (aged 78-89 years) wore the MotionWatch 8© (MW8) for 9 consecutive weeks. Total sleep time and agitation were derived from the MW8 data. We performed time series analysis for each individual separately. To gain insight into the experiences with the actigraphy measurements, care staff filled out an investigator-developed questionnaire on their and participants' MW8 experiences. RESULTS: A statistically significant temporal association between sleep and agitation was present in three out of five participants. More agitation was followed by more sleep for participant 1, and by less sleep for participant 4. As for participants 3 and 4, more sleep was followed by more agitation. Two-thirds of the care staff members (16/24) were positive about the use of the MW8. Acceptability of the MW8 was mixed: two residents refused to wear the MW8 thus did not participate, one participant initially experienced the MW8 as somewhat unpleasant, while four participants seemed to experience no substantial problems. CONCLUSION: A single-subject approach with time series analysis can be a valuable tool to gain insight into the temporal relationship between sleep and agitation in individual nursing home residents with dementia experiencing sleep disturbance and agitation.