How do you help a person with an intellectual disability achieve a higher quality of life?
Providing support, companionship, and dedicated, compassionate care can go a long way, but the Fatal Four can destroy any foundation you work to build. Dehydration, constipation, aspiration and seizures make up the Fatal Four. These conditions have the potential to severely impact a person’s quality of life and, in some cases, can be deadly.
Why are Seizures One of the IDD Fatal Four?
A seizure is an event in which a person’s brain experiences a surge or “storm” of electrical activity, which interrupts the brain’s typical functioning. About 1 in 10 people will experience a seizure at some point in their life, and many of those seizures do not recur. However, some people experience multiple seizures and are diagnosed with a seizure disorder.
Seizure disorder, also called epilepsy, is a developmental disability. Like autism and cerebral palsy, many individuals with epilepsy have typical IQs and live highly independent lives. However, there are many individuals with IDD who have epilepsy in addition to another disability. As many as 35 percent of individuals with cerebral palsy and 75 percent of individuals who have experienced brain injuries may also have a seizure disorder.
Seizures can be dangerous in the moment they occur, because the individual experiencing them often loses control of their body, loses consciousness, or both. This can result in a variety of injuries, accidents, and dangerous situations: imagine what would happen if a person suddenly lost consciousness while swimming, driving, or crossing a busy street.
The accumulated effects of seizures over a lifespan can also be deadly. Individuals whose seizure disorder is not well-controlled may experience severe complications, including death.
Risk Factors for Seizures
Individuals who have a known seizure disorder may have seizures at any time for no apparent reason. However, some circumstances might provoke a seizure even in a person who does not have epilepsy. These include:
- Brain injury
- Brain infections
- Liver or kidney failure
- Severe high blood pressure
- High fever (typically in children)
- Drug use or toxic substances
For individuals who do have epilepsy, anything that causes stress to their brain or body systems could increase the risk of a seizure. Further, some individuals have specific “triggers” for seizures. Classic examples include flashing lights or certain sounds.
Complications from Seizures
The most common immediate dangers of seizures are not from the seizures themselves. Seizures can result in falls, drowning, or other injuries, and a person who vomits during a seizure can choke on or aspirate their vomit. However, there may be other serious complications due to a seizure or ongoing seizure disorder:
- Emotional distress. Individuals coping with epilepsy are at a greater risk of depression and other psychological disorders due to the fear and uncertainty that seizures often cause.
- Cognitive decline. Individuals who experience many seizures over a long period of time may experience gradual memory loss and other cognitive decline.
- Status epilepticus. This occurs when a seizure or series of seizures continues indefinitely without the person recovering in between. Very long seizures can be dangerous and require medication to resolve.
- Sudden unexpected death in epilepsy. SUDEP occurs in one-tenth of a percent of people with epilepsy, and it is not fully understood. SUDEP typically occurs during or immediately after a seizure.
In general, seizures that last longer than 5 minutes are considered a medical emergency. A series of seizures is also considered an emergency. These situations can result in permanent injury or death.
Note that aspiration, another of the Fatal Four conditions, is a possible complication from seizures.
Signs of Seizures
There are many different types of seizures. Seizures don’t always involve full-body convulsions; in fact, seizures that impact only part of the brain or body are more common. Here are some examples of possible signs of a seizure:
- Tremors or “shaking”
- Loss of control over parts of the body
- Unusual eye movements
- Sensory abnormalities
- Appearing “absent” or staring
- A scream or cry
- Loss of consciousness
- Disorientation or confusion
Seizures are very individualized, and there are many more signs than can be listed here. People who experience repeat seizures typically develop a pattern of seizure that is typical for them. However, seizures can still occur unpredictably even for people with an established pattern.
Responding to Seizures
Since there are so many types and causes for seizures, there is no one-size-fits-all response to a seizure. In general, you should consider these actions:
- Monitor for environmental risks. Be alert to the potential for falls, for colliding with furniture or other items, for walking into traffic, or any other hazards in the environment. Do what you can to prevent injury.
- Prevent choking or aspiration. Some individuals may vomit while seizing, which puts them at risk of aspiration or choking. If possible, help the person turn onto their side or in a recovery position. Don’t put anything into the mouth of a person who is seizing.
- Do not restrain them. Restraining or holding a person down can cause injury, and in their disoriented state they may struggle.
- Prepare to report. Pay attention to the details of the seizure, including what was happening before, if you noticed any initial warning signs, how the person behaved while seizing, the time it started, and how long it lasts. You will document this later, and if the person needs medical support you will share it with the emergency responders.
- Support the aftermath. People who are coming out of seizures may not act like themselves. They may be disoriented, frightened, tired, or weak. Avoid offering food or beverage, or asking the person to do anything physically taxing, in the immediate aftermath of a seizure. Stay with them until you are sure they are fully awake.
- Get help if you need it. Contact emergency medical services (call 911) if indicated on the person’s plan, or if you have any concerns about the course of their seizure. Anyone who is not breathing, who is pregnant, who sustains a significant injury due to a fall or other hazard, or who has never had a seizure before should receive immediate medical assistance.
Many individuals who experience repeated seizures will have a personalized seizure plan or protocol written by their doctor. They may require specific intervention, such as using a medication to stop their seizure or calling 911 if certain conditions are met. Be sure to follow this plan carefully and notify the person’s medical team of any changes or concerns.
10 Ways DSPs Can Prevent Seizures or Related Injuries
Seizures aren’t always preventable, but direct support professionals (DSPs) can play an important role in helping the people they support to reduce their risk of seizures or related injuries.
1) Provide medication support
Anticonvulsant medications can substantially lower a person’s risk of having a seizure. Help the individuals you serve take their medications on time and as prescribed by their doctor.
2) Avoid known seizure triggers
This can vary tremendously from person to person. Some individuals have seizures triggered by specific songs, by flashing lights, or by monthly hormonal fluctuations. Some individuals have no known triggers. Drugs and alcohol are common triggers.
3) Know their warning signs
Some individuals have specific warning signs prior to a seizure. They may feel dizzy, lose sensation in part of their body, or have other unique indicators that a seizure is imminent. Recognizing these signs can create an opportunity to lie down, move away from hazards, or call for help if needed.
4) Recommend showers
It takes very little water to drown, so a seizure while in the bath can be fatal. Encourage individuals at risk for seizures to take showers instead, and consider the use of a shower chair to reduce the risk of slipping and falling if a seizure occurs.
5) Beware the heat
Intense heat can increase dehydration, another of the Fatal Four conditions. Dehydration is a risk factor for seizures.
6) Support sleep hygiene
Not getting enough sleep can increase a person’s risk of seizures.
7) Treat fevers
Illnesses, particularly high fevers, can sometimes trigger seizures, particularly in individuals with a known seizure disorder.
8) Help manage stress
High levels of stress can trigger seizures in some individuals. Stress can also trigger other risk factors, such as dehydration due to forgetting to drink fluids or not getting enough sleep.
9) Recognize situational hazards
Although individuals with seizure disorders can often participate in a wide array of typical activities, be aware of which activities pose special risk for the individual you support. Stairs, for example, can be dangerous for someone who typically falls when they seize and who has no prior warning of an oncoming seizure.
10) Document all seizures
Even if a seizure seems minor, it is important to keep a record of it. The individual’s medical team can learn valuable information about treatment needs by knowing facts such as the time, duration, and features of a seizure. Documenting all seizures or suspected seizures can help to identify patterns of possible triggers or warning signs.
DSPs and other caregivers need to know how seizures and the rest of the Fatal Four – dehydration, constipation, and aspiration – interact and potentially cause other serious health problems. The only way to keep the Fatal Four from claiming more lives is education and prevention.