Sleep problems in adults with Down’s syndrome: Research update

Here is a summary of the findings of a research study, looking at sleep problems in adults, which was supported by the DSA. A big thank you to all of our members who took part in this valuable study.


By Dr Rebecca Stores, University of Portsmouth.

Background

Sleep disturbance is common and can have harmful psychological and physical effects. People with a learning disability are at a particularly high risk. While sleep problems in children with Down’s syndrome have received a reasonable amount of attention, very little has been written about adults with Down’s syndrome.

New research study

We recently carried out a new research study which aimed to:

  • Describe the range of sleep problems in adults with Down’s syndrome and how common they are from the perspective of family carers,
  • Explore associations between sleep problems and age, gender, body mass index, level of intellectual disability, daytime sleepiness and general health and well-being,
  • Explore possible sleep problems of family carers and other family members to see whether their sleep is affected by their relative with Down’s syndrome, and
  • Obtain information from adults with Down’s syndrome themselves about their sleep.

Who took part in the research and what did it involve?

The research consisted of two surveys, the first completed by family carers of adults with Down’s syndrome aged 16 years or older and the second, by adults with Down’s syndrome themselves (with assistance from carers, relatives or friends where appropriate).

The survey of family carers was completed by 100 family carers recruited through the UK Down’s Syndrome Association via their electronic newsletter, blog, Facebook and Twitter accounts. It took carers around 20-30 minutes to complete the survey.

The survey of adults with Down’s syndrome was completed by 68 individuals aged 16 years and over also recruited through the Down’s Syndrome Association via the Down2Earth group, electronic newsletter, blog, Facebook and Twitter accounts. Respondents were advised they might find it helpful to ask someone to help them answer the questions such as a carer, relative or friend.

Research findings

Survey of family carers

  • High rates of a wide range of sleep problems were reported. These included problems in getting off to sleep or staying asleep, other problems and behaviours during sleep, features associated with obstructive sleep apnoea and sleep related problems and behaviours occurring during the day.
  • Rates of occurrence were similar to those in a group of children with Down’s syndrome studied previously by the researcher suggesting problems may persist into adulthood.
  • The occurrence of sleep problems were not associated and age, gender or level of intellectual disability.
  • High rates of excessive daytime sleepiness were found with 38% falling into clinically significant categories.
  • Significant associations were found between specific sleep problems and body mass index, excessive daytime sleepiness and a range of health and psychological/behavioural problems.
  • Low rates of treatments for sleep problems were reported.
  • The majority of family caregivers (58%) felt their own sleep was affected by the sleep of their relative with Down’s syndrome as were other family members. Responses indicated the considerable impact this had in some cases.

Survey of adults with Down’s syndrome

  • High rates of self-reported sleep problems of different types in these adults including problems getting to sleep, night waking, difficulty getting back to sleep, early waking, problems with breathing and being sleepy during the day.
  • Other individual responses related to feeling insecure, needing the toilet, restlessness, pain and thoughts about family members.

Implications

Sleep problems in adults with Down’s syndrome are common and varied. Efforts are required to increase awareness of sleep disruption generally in adults with Down’s syndrome including making individuals aware that poor sleep is not an inevitable aspect of the condition, but is potentially treatable. Assessment and treatment of sleep problems should be offered to all adults with Down syndrome’s to help improve quality of life.

How will the research findings be disseminated?

A detailed account of the finding of the survey of family carers has been published in the Journal of Applied Research in Intellectual Disabilities (JARID). The findings will also be shared in other publications for professionals and presented at research conferences and specialist meetings with the aim of publicising the importance of the subject for clinical practice and further research.

Who organised and funded the research?

This study was sponsored and funded by the University of Portsmouth and the Baily Thomas Charitable Fund.

If you would like further information about this research, please contact:

Dr Rebecca Stores
Senior Lecturer
School of Health Sciences and Social Work (SHSSW)
University of Portsmouth
Email: rebecca.stores@port.ac.uk.

Rebecca Stores is a Senior Lecturer at the School of Health Sciences and Social Work at the University of Portsmouth. She has carried out previous research on sleep disorders and psychological functioning in specific groups including children with Down’s syndrome and other forms of learning disability.