Clients with epilepsy
Epilepsy in clients
Guiding and supporting clients with epilepsy requires extra attention and constant decision making from you as a care professional.
Epileptic seizures involve a variety of risks. These risks differ per client and can vary in the various settings at home, work or day activity centre. There are obviously more night-time risks in a residential setting, for example. Besides offering your client maximum levels of freedom and safety, you also aim to safeguard their privacy. How can you best approach that and what should you take into account, as a care professional?
Recognising the types of seizure
As a care professional it is important to have a good indication of when and how often epileptic clients have a seizure. There are various types of seizure, including:
Clonic: These seizures are characterised by convulsions or jerking.
Atonic: In an atonic seizure the client's muscles relax. The seizure often starts suddenly.
Tonic: The client becomes unconscious and their body goes stiff.
Myoclonic: During a myoclonic seizure the client's arm and/or leg muscles suddenly contract, causing twitching and jerking.
Tonic-clonic: During these seizures, the client goes stiff and jerks.
Read more about the different types of seizures here.
Tips and advice to reduce the risks
Medication or other treatments can stop seizures from happening in around 70% of people with epilepsy. This means that some people will continue to have seizures. Seizures carry risks in some cases depending, among other things, on the type of seizure and the circumstances. Practical tips and advice are available on reducing the risks for clients with epilepsy. At the day activity centre, for example, make sure there is sufficient variety in activities and stimuli. These should also correspond with the client's possibilities and interests.
For epileptic clients living independently, it is a good idea to use electrical devices with time locks and to consider the security of the home. It is important to ensure that the client is safe and cannot injure themselves during a seizure. Read more tips and advice on living independently with epilepsy.
Sleeping for clients with epilepsy
Sleeping is an important area for concern for clients with epilepsy.
Lack of sleep increases the risk of an epileptic seizure. Nocturnal epilepsy can also cause sleeping problems which, in turn, can lead to depression or mood disorders.
In exceptional cases, a night-time seizure can result in death: SUDEP (Sudden Unexpected Death in Epilepsy). Despite extensive examination, a cause of death is often never found. No exact statistics are recorded in the Netherlands, as it is not common practice to perform a post-mortem examination. On average, 1 in every 1,000 people with epilepsy dies of SUDEP every year. We know that the risk of SUDEP is smaller if someone else is in the same room during or immediately following the seizure.
Responsible risk management
Responsible risk management is linked to the quality of life for clients with epilepsy. However, implementing risk-reducing measures often means clients sacrificing a degree of privacy, movement and pleasure, i.e. their quality of life.
There are several points which you, as a care professional, could consider to help you minimise these risks as much as possible. First of all, gain as much information as possible about the seizures. When do they happen? Do they happen in specific circumstances? Secondly, it is important to identify any particular factors which may trigger seizures. Can these factors be avoided? Good seizure control is crucial. The fewer the seizures the fewer the risks. The advice, therefore, is to do everything possible to avoid seizures.
At present, many care organisations note relevant details in a diary or use video and sound recordings. Unfortunately, these often prove inadequate. They do not always detect clinically urgent seizures and give too many false alarms. They also increase the workload. Many care professionals are searching for an accurate, reliable device that records these data automatically.
Providing prompt and adequate aid is crucial but also a challenge, especially at night when supervision is difficult and seizures can go undetected. While nocturnal seizures can also lead to unsafe situations and serious consequences, including a SUDEP. This is a cause for considerable concern to many care professionals. The use of a detection and alarm device is therefore essential. Read more about the risks of epilepsy.
NightWatch: seizure detection system for clients with epilepsy
The NightWatch was developed by epilepsy centres in the Netherlands (Kempenhaeghe and SEIN) in collaboration with UMC Utrecht, TU/Eindhoven and the Dutch Epilepsy Fund. The NightWatch system consists of a wireless arm module that your client wears while sleeping. Sensors in the arm module measure any changes in heart rate and movements and determine whether the measurements indicate a potentially dangerous epileptic seizure. The NightWatch will then alert you via the corresponding base station, which can optionally be connected to an existing nurse call system.
Benefits of the NightWatch
Reduces the burden of care
Recent clinical studies showed that the NightWatch registered nine out of ten clinically urgent nocturnal seizures. This leads researchers to believe that its use could reduce the number of SUDEP deaths among patients with epilepsy. As well as increasing your client's safety while sleeping it also relieves the burden of care on you. By enabling you to provide adequate assistance at an early stage, the system also reduces the risk of medical complications. It also offers your client more privacy, as video and sound recordings are no longer necessary. Furthermore, the system can relieve some of the burden on you as a care professional. Experience shows that the NightWatch can take away much of the uncertainty that epilepsy brings.
The NightWatch also enables data to be read out later via an online portal. This allows you to share the data with the attending physician thus providing relevant insight. The NightWatch can be connected to existing nurse call systems and used within existing care processes, which makes it highly user-friendly. This benefits both the quality of care and the quality of life for people with epilepsy.