#16. Sleep problems are common and impact learning, development, health and family life
Sleep is important for development and learning, behavior and general health. Research suggests that sleep problems are common among young people with Down syndrome and are likely linked to cognitive difficulties and behavior problems. Further research is needed to evaluate treatments and potential therapies.
What research has shown
Research studies report that sleep disturbance is common among children with Down syndrome, and 30%-50% more common than among typically developing children.[ 1 - 5 ] There are a number of reasons for poor sleep patterns including breathing difficulties from snoring to obstructive sleep apnoea (OSA), night waking, restlessness, difficulty settling to sleep and early waking. There can be both physical and behavioral reasons for these sleep difficulties.
OSA has been the most researched cause of sleep difficulties. Estimates of prevalence vary from 24-79% and suggest OSA may start very early in life[ 6 ] and be linked to other medical problems and obesity.
Behavioral sleep problems are also common - for example in a UK population based study of 40 4-18 year olds with Down syndrome, 25% usually resisted going to bed, and 33% fell asleep in parents or siblings bed on at least 2 nights a week.[ 2 ] Once asleep, 58% were described as restless during sleep and 26% of children aged 7 years or over regularly wet the bed. During the night, 40% usually woke at least once and 28% at least twice, and once awake, 48% regularly moved to someone else's bed. Half of all children had fallen asleep in the car in the preceding week and 70% seemed tired during the day on at least 2 days a week. In this study there was no reduction of sleep difficulties with age except for fewer night wakings in the over 13 year olds though some improvements with age have been reported in other studies.[ 3 , 4 ] In a US population based study of 107 7-17 year olds 65% were reported to have significant sleep problems in the past month compared to 23% in a non-disabled elementary school peer group. In this study 46% reported sleep related breathing problems and 21% sleep related movement disorders.[ 5 ]
These statistics should raise serious alarm bells. An increasing amount of research suggests that for all children sleep effects learning and memory.[ 7 ] For children with Down syndrome, those with more sleep difficulties have more daytime behavior difficulties and their mothers are more stressed. (Though we should note that the direction of cause and effect is not certain without further longitudinal research: is poor sleep leading to difficult behavior or do children who have difficult behavior during the day sleep less well?)[ 8 ] It is likely that the whole family is negatively affected when a child does not sleep well whatever the causes. There are also recent findings that sleep difficulties, OSA and length/type of sleep may affect language and cognitive functions in children and young adults with Down syndrome.[ 9 - 11 ]
Despite the fact that sleep difficulties are so common and have serious implications for both children and their families, there is only a small amount of research on treatments. For OSA treatments include removing tonsils and adenoids and then providing CPAP - a device maintaining breathing at night and keeping airways open. These treatments can be successful and in one careful study 72% of children with DS tolerate CPAP.[ 12 ] CPAP has been shown to improve attention and school performance in typically developing teenagers.[ 13 ] However, many of the sleep difficulties described are behavioral yet there seems to be only one small study showing that parent training can provide parents with effective strategies and reduce sleep difficulties in children with Down syndrome[ 14 ] despite a literature showing behavioral treatments are effective for the same types of sleep difficulties in typically developing children.[ 15 ] Parent training can include advice on prevention by developing calm and consistent bedtime routines to encourage settling as well advice on how to set limits and manage/change bedtime refusals and night waking behaviors. Families need to know that it is possible to change sleep patterns and that they should not simply tolerate and work around them as the long term effects for the child and everyone in the family are potentially serious.
How this is helping
Screening for sleep problems and OSA is recommended in established health care guidelines for children with Down syndrome (though often screening is not easy to obtain).
Treatments for OSA are being increasingly implemented and evaluated.
Teachers and parents are increasingly aware that behavior and inattention may be a consequence of poor sleep.
Future research is needed to:
- understand the prevalence of the different types of sleep disturbance, how each influences development, health and behavior, any changes in patterns with age and links with other health, child or family characteristics
- develop and evaluate intervention strategies to enable families to reduce behavioral sleep difficulties
- develop and validate screening tools for sleep difficulties that can be cost-effectively used outside hospital settings
- Stores G. & Stores R. (2013) Sleep disorders and their clinical significance in children with Down syndrome. Developmental Medicine and Child Neurology , 55, 126-130. https://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2012.04422.x/full
- Carter, M., McCaughey, E., Annaz, D. & Hill, C.M. (2008) Sleep problems in a Down syndrome population. Archives of Diseases in Childhood 94, 308-310.
- Breslin, J.H., Edgin, J.O., Bootzin, R.R., Gppdwin, J.L. & Nadel, L. (2011) Parental report of sleep problems in Down syndrome. Journal of Intellectual Disability Research , 55, 1086-1091.
- Stores, R., Stores, G. Buckley, S. (1996) The pattern of sleep problems in children with Down's syndrome and other intellectual disabilities. Journal of Applied Research in Intellectual Disabilities , 9, 145-158.
- Hoffmire, C.A., Magyar, C.I., Connolly, H.V., Fernandez, I.D. & van Wijngaarden, E. (2014) High prevalence of sleep disorders and associated comorbidities in a community sample of children with Down syndrome. Journal of Clinical Sleep Medicine , 10, 411-419. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3960384/
- Goffinski, A., Stanley, M. Shephard, N et al. Obstructive sleep apnoea in young infants with Down syndrome evaluated in a Down syndrome specialty clinic. American Journal of Medical Genetics; Part A 167A, 324-330. https://onlinelibrary.wiley.com/doi/10.1002/ajmg.a.36903/full
- Gomez, R. L., Newman-Smith, K.C., Breslin, J.H. & Bootzin, R. R. (2011) Learning, memory and sleep in children. Sleep Medicine Clinics , 6, 45-57. https://w3.arizona.edu/~tigger/assets/documents/Gomez-etal-11.pdf
- Stores, R., Stores, G., Fellows, B. & Buckley, S. (1998) A factor analysis of sleep problems and their psychological associations in children with Down syndrome. Journal of Applied Research in Intellectual Disabilities , 11, 345-354.
- Breslin, J., Spano, G., Bootzin, R., Anand, P., Nadel, L. & Edgin, J. (2014) Obstructive sleep apnoea syndrome and cognition in Down syndrome. Developmental Medicine and Child Neurology , 56, 657-664.
- Chen, C., Spano, G. & Edgin, J.O. (2013) The impact of sleep disruption on executive function in Down syndrome. Research in Developmental Disabilities . 34, 2033-2039.
- Brooks, L.J. Olsen, M.N. Bacevice, A.M. Beebe, A. Konstantinopolou, K. & Taylor, H.G. (2014) Relationship between sleep, sleep apnoea and neurological function in children with Down syndrome. Sleep Breath doi:10.1007/s11325-014-0992-y
- O'Donnell A.R., Bjornson C.L., Bohn, S.G. & Kirk V.G. (2006) Compliance rates in children using non-invasive continuous airway pressure. Sleep, 29, 651-8.
- Beebe, D.W., & Byars, K.C. (2011) Adolescents with Obstructive Sleep Apnoea adhere poorly to Positive Airway Pressure (PAP) but PAP users show improved attention and school performance. Plos One 6, 3, e16924 https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0016924
- Stores, R. & Stores, G. (2004) Evaluation of brief group administered instruction for parents to prevent or minimize sleep problems in young children with Down syndrome. Journal of Applied Research in Intellectual Disabilities , 17, 61-70.
- Moore, M. (2012) Behavioral sleep problems in children and adolescents. Journal of Clinical Psychology in Medical Settings , 19, 77-83.