Disrupted sleep in DEEs: unveiling the hidden impact

While we sleep, our body and mind have time to rest, repair, and process the previous day. Sleep is one of the basic human needs and something many of us take for granted. People living with Developmental and Epileptic Encephalopathies (DEEs), and their families often do not have this luxury.

Individuals living with DEEs, which are rare, severe, and lifelong neurological disorders, experience disruptive sleep as frequent awakenings, prolonged periods of wakefulness, or unpredictable sleep-wake patterns that deviate from their typical baseline, as observed by caregivers.

For children and adults living with DEEs, sleep disruptions are not driven by seizures alone. Physical and cognitive challenges make it difficult for them to find a comfortable position, communicate needs, or, sometimes, even recognize the difference between day and night. Simple things that most people do naturally - like rolling over in bed - often require the help of someone else. In some cases, vocal distress, such as sudden screaming in the middle of the night, becomes the one of the only ways to signal discomfort or communicate unmet needs. Sleep is disrupted not only by medical factors but also by the everyday challenges of living with DEEs.
 

A nightly challenge for the whole family

One of the aims of UCB’s recent survey of 489 caregivers to people living with DEEs was to shine a light on the issues surrounding sleep. The survey revealed that for nearly one in ten patients (9.6%), sleep was described as “unpredictable with no typical pattern,” while more than a quarter (27.0%) experienced daily disruptive sleep. These disruptions were not trivial; for many, they reflected a nightly battle with issues such as medication side effects (33.5%) and the use of medical devices (2.2%).

For many parents, nighttime care means sleeping apart - not by choice, but out of necessity - whether that involves cosleeping with their child, rotating caregivers overnight, or remaining on high alert due to seizure activity and/or monitoring devices. For these parents, this can mean going to work exhausted and struggling to keep up with their most basic family, social, and personal needs. But imagine a sibling of a child with a DEE frequently going to school on little sleep - woken up the night before because of a false alarm or a real seizure emergency - and struggling to get back to sleep because they are worried about their brother or sister.
 

Constant worry

Some people living with rare and complex epilepsies continue to experience frequent and uncontrolled seizures and remain at a higher risk of Sudden Unexpected Death in Epilepsy (SUDEP).

For example, children with Dravet syndrome are 15 times more likely to die of SUDEP and those with Lennox-Gastaut syndrome have a 24 times greater likelihood of premature death compared to individuals with other childhood epilepsies,  This can bring pervasive anxiety to the entire household.

The impact on families is also clear, nearly half of caregivers (45.6%) reported co-sleeping and just over half (51.1%) used night-time seizure-monitoring devices. The use of such devices also introduces their own complexities. False alarms - reported in 44.8% of device users - can further disrupt sleep for both patients and their families.
 

The ripple effect: Impact on daily function and communication

The consequences of poor sleep also extend far beyond the night. There is a strong association between sleep disturbances and the temporary loss of independence in activities of daily living (ADLs), such as feeding, bathing, dressing, and toileting.

Nearly a quarter (24.5%) of people living with DEEs experienced the temporary loss of at least one ADL following disrupted sleep, while over one in five (21.5%) temporarily lost the ability to communicate - a sobering reminder of how intertwined sleep, function, and quality of life truly are.

A call for comprehensive, holistic care

Together, these findings underscore that sleep disruption in DEE is common, impactful, and closely tied to daily functioning - making sleep a core, not secondary, component of DEE management. The barriers to optimal sleep require a coordinated, multidisciplinary approach. Clinicians, caregivers, and health systems must recognize the wide-ranging effects of disrupted sleep - not only on seizure control, but on the broader landscape of daily living and well-being.

We need to equip families with practical tools and resources to improve sleep hygiene and validate the lived experiences of patients and caregivers, so they are empowered to advocate for better care and quality of life. As we continue to advocate for holistic, person-centered care in DEEs, sleep must become a central pillar in the journey toward better outcomes and brighter futures.