Families speak out about the urgent need to tackle sleep issues for loved ones with Down syndrome

The DSSRN exists to bring researchers together. However, the heart of this network is not just centred on advancing scientific knowledge. The network is responding to a need that is persistent and urgent, and yet seldom noticed outside caregiving circles.

We asked some family members and carers to tell us why the issue matters. In this blog, we share some of the things that family members have said, concerning ways that poor sleep acutely impacts loved ones with DS and their families.

“The negative consequences of H’s sleep deprivation are significant and far reaching. Sometimes just getting through the next day after a disturbed night is all we can manage. Sleep deprivation causes all of these things:

-            Worsens her cognitive functioning and learning delays

-            Contributes to her poor immune function - as a consequence she picks up more illness and infections

-            Causes absences - more days are missed from school due to poor health/lack of sleep

-            She rarely achieves fully restorative sleep due to constant restlessness during sleep

-            Increases her sensory seeking behaviours and hyperactivity

-            Heightens stress and has cumulative effects on her mental health

-            Causes stress to us as her parents/caregivers, and has a knock on effect to our health and wellbeing

-            Directly affects my own management of Type 1 Diabetes, and has contributed to serious illness and hospitalisation for diabetic complications brought on by stress both physical and mental

-            Affects our ability to effectively carry out daily functions, such as work, managing the home, and meeting the needs of other family members

-            Increased tiredness leads to mistakes being made at any level: eg, admin, driving, becoming more accident prone in the home, etc

-            Makes us less likely to plan outings or activities that we might otherwise want to do, as lack of sleep takes away motivation and physical strength

-            Affects our marriage and family life, and destroys being able to spend quality time together when we are always so tired

-            Causes stress and anxiety as we search for ways to alleviate the problem

-            Very costly due to purchasing items that may or may not help, eg, weighted blankets, compression sheets etc

-            Leads to more hospital appointments and intrusive investigations such as sleep studies, which in themselves mean that we get no sleep whilst monitoring her

-            Leads to hospital admissions for surgeries/procedures under General Anaesthetic eg Tonsils/Adenoids removal but with little to no improvement seen.

It feels like we go round in circles, and medics never fully understand what’s going on, or are prepared to think outside the box of the usual ‘go to’ solutions. So sleep studies get repeated, but nothing really changes.

Families like ours are routinely told to expect sleep problems as a part of having Down’s syndrome. This is simply unacceptable. This approach would not be tolerated if it was applied to the general population, who would rightly demand and expect research to look for solutions. Yet people with DS and their families are given so little hope of improvement when it comes to the significant sleep problems they experience. A sleep research network would give them hope that their difficulties may in time be overcome and their quality of life much improved.”

-            AM, Parent in the DS Community

“Talk about quality of sleep is a major concern for people all over the country. Many people don’t even realise that their kids with Down syndrome probably need a sleep study, or what a bad sleep consequently means for our kids. We need multi-site studies to enable clinical trials and to develop solutions for this community.

Following a sleep study, our daughter was diagnosed with sleep apnoea. Since she started using an APAP (automatic positive airway pressure) machine, the difference has been notable. Her voice is stronger, and she no longer falls asleep so readily in the car. When she has a cold, the machine can also help ease her symptoms and support her recovery. Beyond the improvements we can see, we know it is likely benefiting her long-term health too.”

-            LM, Parent in the DS Community

“Poor sleep quality means that my brother, who has Down syndrome, needs to go to bed as early as 7:30pm to get enough hours of sleep in, to allow him to function at his best during the day. As a young adult, this means he misses out on social time with his peers and can contribute to him being treated by others as a child, rather than as the young person he is. It also means he goes to bed at the same time as very young family members and that, in turn, makes him feel infantilised and affects his self-esteem.

Disturbed sleep has meant our family hasn’t taken a holiday in years because it’s too stressful to manage further disturbances caused by a change in environment. That has led, historically, to early abandon of holidays due to extreme exhaustion for everyone, and incurred financial loss therefore as well.

Sleep challenges are major, unseen difficulties that families cope with, often alone. There is a lack of appreciation of the effect of sleep deprivation on everyone. The reality is that there are so few solutions and answers for families that they can struggle on for many years and are often forgotten about even in close communities, as these challenges become normalised over time - yet the lived experience remains the same.

I do think the hidden aspect of sleep challenges within families is a huge thing. It’s not an obvious thing that people can see from the outside by day, but it can be very dramatic for families by night who want to try and keep life and routines as normal as possible by day to help everyone function at their best!”

-            EH, Sibling in the DS Community

The ripple effects of poor sleep are very broad. Tackle sleep issues are a high gain, low risk, and generally low cost intervention, and yet people with Down syndrome do not benefit equally from the sleep interventions that could be offered to them. It’s time to give this invisible issue the attention it deserves, and confront these unequal outcomes.

With gratitude and acknowledgement to the individuals who shared their insights with us. We hope the Down Syndrome and Sleep Research Network will help us move in the right direction towards better outcomes.