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Non-Communicable Diseases, Emergency Care and Mental Health: 15. Epilepsy and Dementia

Study Session 15  Epilepsy and Dementia

Introduction

People with epilepsy have recurrent seizures characterised by a brief period of involuntary shaking. Some people fail to respond to antiepileptic drugs, but more than 70% who receive treatment achieve complete freedom from seizures, usually within five years of diagnosis. Dementia is associated with an ongoing decline of the brain and its abilities, causing problems with thinking, language, memory, understanding and judgement. There is no cure for dementia and symptoms tend to get worse over time. However, there are a number of effective treatments that can help people to cope better with their symptoms and improve their quality of life.

Both epilepsy and dementia are common conditions and you are very likely to come across people with these illnesses in your community. In both cases, the early identification of epilepsy and dementia can have a big impact in terms of effective treatment and management of these problems. In this study session you will learn to recognise the common signs and symptoms of both conditions, the different forms they take, and their common causes. You will also discover what you can do to help people with these conditions. This is very important in Ethiopia because – as with mental illness and the other non-communicable conditions discussed in this Module – significant treatment gaps exist for epilepsy and dementia, particularly in rural areas. So providing help and support to people with these conditions will also be effective in reducing the negative effects of poverty and social inequalities within rural communities.

Learning Outcomes for Study Session 15

When you have studied this session, you should be able to:

15.1  Define and use correctly all of the key words printed in bold. (SAQs 15.1, 15.2, 15.3 and 15.4)

15.2  Describe the common types and causes of epileptic seizures. (SAQs 15.2 and 15.3)

15.3  Explain how to provide emergency treatment for person who is having a seizure, and how to minimise the risk of further seizures. (SAQ 15.3)

15.4  Understand the reasons for referring people with epilepsy and what should be done to support and manage this condition in your community. (SAQ 15.3)

15.5  Describe the main features of dementia. (SAQ 15.4)

15.6  Describe the possible care and treatment of people with dementia in the community. (SAQ 15.4)

15.1  Epilepsy

Epilepsy is characterised by recurrent seizures (sometimes called fits). A seizure is caused by a sudden burst of excess electrical activity in the brain, causing a temporary disruption in the normal messages passing between brain cells. This disruption results in the brain’s messages becoming halted or mixed up.

These seizures may be partial, involving only one part of the body, or they may be generalised, involving the entire body, and they may be accompanied by loss of control of bowel or bladder function. People who get seizures can suddenly lose consciousness and collapse, wherever they are (see Figure 15.1). Their limbs become stiff and the ‘fit’ is characterised by sharp, shaky movements.

Person having an epileptic fit
Figure 15.1  A person having an epileptic fit.

The brain coordinates all the functions of your body, so what is experienced during a seizure will depend on where in the brain the epileptic activity begins and how widely and rapidly it spreads. For this reason, there are different types of seizure.

15.1.1  Types of seizure

Grand-mal seizures

Grand-mal seizures (also called ‘tonic-clonic’ seizures) are the most common type of generalised seizure. Generalised seizures affect all or most of the brain. The person will lose consciousness and won’t remember what happened. During the tonic phase of an epileptic attack, the person may lose consciousness, have stiff muscles, which can make them lose their balance and fall to the ground, cry out, or bite their tongue or cheek. During the clonic phase they may have jerking muscles, lose bladder or bowel control, or become very pale. Tonic seizures are often followed by clonic seizures; however, people may also have either the topic or the clonic phase alone. The epileptic attack (also called the ictal phase) is usually preceded by a phase in which the person feels unhappy and fearful, and may experience unusual sensory events, such as the perception of a strange light, or an unpleasant smell. This period just before the attack is also called the pre-ictal phase. After the attacke (the post-ictal phase) the person often feels drowsy and confused and may have a headache.

Petit-mal seizures

Petit-mal seizures (also called ‘absence’ seizures) happen mainly in childhood. This kind of seizure doesn't involve falling down or having involuntary jerking movements. Instead, the person may lose awareness, look blank and their eyelids might flutter. They may look as if they’re daydreaming. Common between the ages of five and nine years, petit-mal seizures may disappear in adolescence, giving way to grand-mal seizures.

Partial seizures

Partial seizures are seizures that only affect a part of the brain. People with a partial seizure may not lose their consciousness. But these partial seizures may be a precursor to a larger seizure, resulting in a generalised seizure, such as the grand-mal seizure described above.

15.1.2  Features of seizures

Following the seizure, people may experience additional symptoms including headaches, vomiting, aches and pains, extreme tiredness, slurring of speech, weakness, or paralysis of the limbs. The experience of a seizure can drain the body (both physically and psychologically) so, afterwards, people may prefer to rest. Some may exhibit confused or odd behaviour after the seizure.

Nocturnal seizures occur when the person is asleep — in the day or the night.

Seizures may occur in irregular intervals. This may be as frequently as several times in a day or a few times a week. In other instances, they may occur only a few times in a year. The attack may occur when the person is asleep (known as nocturnal seizures), when alone, or while walking on the street or working in the field. Thus in any situation, anywhere, any time, the person can have an attack. The attack may place the person in peril, for instance, when it happens near fire or in the water, or when the person is climbing, operating machinery, or driving a vehicle. The fall following the seizure may result in trauma or burn injury.

Many people with epilepsy find that certain circumstances, or substances, can trigger a seizure. These epilepsy triggers include: stress, lack of sleep, alcohol (particularly if a large amount is drunk in a short time), and health conditions that cause a high fever. Also, some women may find that they are more prone to having seizures just before, during or after their menstrual period. This is because the hormones released by the body during this time can change the chemical composition of the brain, making seizures more likely. Also the changes in mood many women experience before their period — premenstrual tension (PMT) — can make them feel stressed and anxious, which again increases the chance of a seizure.

Most people with epilepsy have something that is known as a seizure threshold. People with a low seizure threshold will experience frequent seizures and be sensitive to epilepsy triggers. Those with a high seizure threshold will experience less frequent seizures, and epilepsy triggers will have less effect on them.

15.1.3  Attitudes towards epilepsy

People have different views about epilepsy. For example, there is a traditional belief that epilepsy is a form of insanity, caused by supernatural forces or possession by evil spirits (see Study Session 11, Section 11.1.2). There is also a belief that epilepsy is contagious. Such beliefs are not supported by evidence and can result in negative (prejudiced) attitudes towards those who have epileptic seizures, increasing their social isolation and limiting their access to treatment.

  • Look back to Study Session 9 (Section 9.2.2) and Study Session 11 (Section 11.1.2). When you have done so, answer the following questions:

    • a.What views and beliefs do people in your community have about epilepsy?
    • b.How might you address the negative consequences of such views?
  • Your answer may have included some of the following points:

    • a.It is likely that you will encounter a range of views about epilepsy, including traditional beliefs where those who have seizures are feared and shunned. As we have stressed throughout this Module, it is important to think carefully about how you can work with such beliefs. This involves listening patiently to people’s concerns and, wherever possible, responding in a way that is sensitive to traditional explanatory models and local cultural contexts.
    • b.The best way to challenge the more negative aspects of traditional views is not through confrontation but through the provision of sound, professional knowledge. Educating the community about mental health issues is a key aspect of your role and this can be highly effective in challenging the more negative features of traditional beliefs. For example, people are less likely to assume that epilepsy is the work of spirits if they have accurate information about its medical causes.

15.1.4  The causes of epilepsy

For most people — six out of ten, in fact - there is no known cause of epilepsy and this is called idiopathic epilepsy. But sometimes the reason epilepsy develops is clear. It could be because of a severe blow to the head, a stroke, or an infection of the brain such as meningitis. Epilepsy with a known cause is called symptomatic epilepsy. Epilepsy can also be caused by drug and alcohol misuse, by conditions that affect the structure of the brain, such as cerebral palsy, by birth defects or by problems during birth which cause a baby to be deprived of oxygen (such as the umbilical cord getting twisted, or compressed, during labour).

The causes of oxygen deprivation (hypoxia) in newborns is covered in the Labour and Delivery Care Module.

Sometimes children below five years of age can have a seizure when they have a high fever. This is called febrile convulsion. If epilepsy occurs for the first time after the age of 20 years, it is usually symptomatic epilepsy, due to detectable brain damage such as a scar or healed wound in the brain, bleeding inside the brain, or damage because of long-term, excessive use of alcohol.

The diagnosis of epilepsy is mainly based on the description of the seizure given by the person themselves and any eye witness accounts. Box 15.1 provides examples of some of the questions you should ask the person and their family after a seizure has taken place.

Box 15.1  Useful questions for assessing epileptic seizures

Questions to ask the person:

  • How did you feel before you had the seizure, for example hot, cold, hungry, tired, etc.?
  • Did you experience any unusual symptoms beforehand, for example, nausea, dizziness or chest pain?
  • Had you drunk any alcohol or taken any drugs of any kind?
  • Did you have any warning beforehand? If so, what?
  • Do you remember anything about the seizure? If not, what happened when you came round?
  • Did you fall over and/or injure yourself?
  • Were there any symptoms after the seizure?
  • How many seizures have you had?
  • Are there any other factors which could suggest epilepsy, for example, head injury, previous seizures, other people in your family with epilepsy?

Questions to ask witnesses:

  • What was the person doing when the seizure started?
  • What exactly happened when they had the seizure?
  • How long did the seizure last?
  • Did they appear confused after the seizure?

A useful method for gaining insight into the recurrence of seizures is to encourage the person to keep a seizure diary (or mental record), noting the date, type of seizure, the time it occurred and its duration, and any thoughts they may have about possible epilepsy triggers or other relevant features.

15.1.5  Emergency treatment for epilepsy

Epilepsy is not usually a life-threatening condition. However, a small number of people die from epilepsy each year, usually as a result of accidents or status epilepticus (see below). In this section you will learn what you can do if you come across someone during a seizure.

The best response to a seizure attack is simply to prevent the person from self-injury by moving them away from dangerous sharp edges, placing a soft pillow under their head, and carefully rolling the person into the safe lateral position (see Figure 15.2). To prevent injury, objects should not be placed in the person’s mouth during the seizure. It is also important not to light matches, give the person anything to drink, or to try to stop the fit by force or by holding them tight.

This is a position in which the person is put on their side, to avoid fluid going into the lungs.

Protecting a person during a seizure
Figure 15.2  Protecting a person during a seizure attack.

If a seizure lasts longer than five minutes (or the seizures begin to come in ‘waves’ one after the other), this may be a sign of status epilepticus. Although rare, status epilepticus is a serious medical emergency characterised by two or more seizures occurring in succession without the person regaining consciousness.

This may occur because of the sudden discontinuation of antiepileptic drugs, alcohol withdrawal (in chronic alcoholics), or as the result of an infection of the central nervous system or an accident involving trauma to the head. Status epilepticus could occur without previous history of seizure disorder. Individuals with status epilepticus can be helped by being put in the safe lateral position, by checking blood pressure frequently, and by referring them urgently to the nearest general hospital, accompanied by a close relative or yourself.

After a seizure (whether as a single fit or status epilepticus), the person should not be allowed to wander about unsupervised until they have returned to their normal level of awareness. The person should remain observed until they have completely recovered. It is helpful if those present at the time of a seizure make notes (see the section on seizure diaries at the end of Section 15.1.4) as these could prove useful in diagnosis.

15.1.6  Drug treatment of epilepsy

Although there is no cure for epilepsy, it is treatable and can be controlled with regular medication. Epilepsy is a long-term condition and, with treatment, the outlook is very good for most people. Symptoms can usually be controlled using a class of medication known as antiepileptic drugs (AED).

It can take some time to find the right type of AED, and the correct dose, before the seizures are brought under control. With a clear understanding of epilepsy and effective management in the community, the risk of seizures can be minimised. A general guide about the use of antiepileptic drugs is given below.

AEDs do not cure epilepsy, but they do prevent seizures from occurring. There are many different AEDs, but they all tend to work by either altering the electric transmissions in the brain or altering the chemicals in the brain. Adverse effects of medication (see also Section 11.2.4 of Study Session 11) are common when people begin taking AEDs and may include nausea, abdominal pains, drowsiness, dizziness, irritability, and mood changes. For some people, the side effects will pass within a few days, whereas for others, the effects may persist for many months. Some side effects, which produce symptoms that are similar to being drunk, occur when the dose of AEDs taken is too high. They include unsteadiness, poor concentration, drowsiness, vomiting and double vision. If someone tells you that they experience any of these symptoms, you should advise them to attend the health centre immediately, so that their medication can be revised.

It is also important that you emphasise the importance of adherence to treatment. Advise the person (and their family) that they should never suddenly stop taking an AED because doing so could cause a new seizure. While taking AEDs, they should not take any other medicines, including traditional medicines, without consulting a doctor. This is because other medicines could cause a dangerous interaction with their AED and cause a seizure.

If the person remains seizure-free for more than two years, it may be possible for them to stop taking their AED. However, they should not do this until it has been agreed by the doctor.

15.1.7  Reasons for referral

You should refer in the following circumstances:

  • If you come across a person with epilepsy who has never been treated.
  • If you suspect a person is having a seizure for the first time and is above the age of 40 years.
  • If the seizure occurs in a child under two years of age.
  • If the person is pregnant.
  • If there has been a recent increase in the frequency of seizures, despite the use of AED medication and in the absence of any explanation.
  • If you suspect status epilepticus.
  • If there is evidence of psychiatric illness (requiring psychiatric drug treatment).
  • If there are severe side effects.

15.2  Dementia

Dementia is a common problem which, like epilepsy, is related to problems with the functioning of the brain. Dementia affects a person’s mental ability, personality and behaviour. People with dementia commonly experience problems with memory and the skills needed to carry out everyday activities. They may also have problems controlling their emotions or behaving appropriately in social situations. Aspects of their personality may change. Most cases of dementia are caused by damage to the structure of the brain, leading to the death of brain cells. There are many different types of dementia; the most common type is called Alzheimer’s disease.

Although it can occur at any age, dementia is more common in older people (but it is not part of normal ageing). The older people get, the more likely they are to develop dementia. Dementia usually gets worse slowly, often over many years, and may mean that the person affected can no longer live independently. The disease therfore affects both people who develop dementia and the people who care for them. It can shorten people’s lives and is an important cause of disability.

Reflecting the ageing global population (with people living longer lives), dementia is a growing problem. There are currently no treatments that can cure or stop the progression of most forms of dementia. However, drugs and other treatments can improve symptoms in some people. There is a significant treatment gap in the provision for people with dementia. Symptoms of dementia can also develop as a result of other long-term health problems, such as epilepsy, alcohol-related brain damage and head injury.

Alzheimer’s disease can develop in people with Down syndrome (see Study Session 17) and this usually happens around the age of 30. The signs and symptoms are similar to those seen in people without this syndrome. Sometimes people with AIDS develop AIDS-related dementia, including forgetfulness, difficulty in concentrating, personality changes and loss of coordination.

Although there is no expectation that you will be involved in the diagnosis of dementia, it is important to reflect on the symptoms above so that you are aware when a referral for treatment is necessary. A useful technique is to use the questions in Box 15.2 to gain greater understanding of the specific features of dementia in the person you are supporting.

Box 15.2  Useful questions for assessing dementia

Questions to ask the family or friends:

  • When did you first notice a problem?
  • How did the illness start? Does the person have problems remembering things?
  • Does the person have difficulty in everyday activities such as eating, bathing and using the toilet?
  • Do they behave in odd manner?
  • Have they seemed sad or lost interest in daily life?

Questions to ask the person with memory problems:

In the following, you should award each correct answer with a mark. If a person answers less than six questions correctly then there is a possibility that they have dementia and should be referred for assessment.

  1. How old are you?
  2. What time is it now?
  3. Which woreda do you live in? (kebele, and village and address)
  4. What is the month and year?
  5. What is the name of the health institution or home address you are at?
  6. Do you recognise the people around you?
  7. Do you know when you were born?
  8. When did the current Ethiopian government win the first election?
  9. Who is the prime minister of Ethiopia?
  10. Name the days of the week backwards.

15.2.1  Treatments for dementia

Memory loss cannot be reversed, but you can minimise suffering in people affected by dementia by using these tips. It is important that you give tips to a person with memory loss, so that they do not have to learn new information, which is the most difficult thing for people with dementia.

  • Put your keys in an obvious place.
  • Put labels on cupboards, drawers or boxes.
  • Instruct family members to remind you when you forget things.
  • Try to memorise unfamiliar things by associating them with well-known things.

Try to review regularly the person’s ability to perform daily tasks safely, behavioural problems and their general physical condition. You need to make sure the person and their family understand that the condition may impair their ability to function properly, and to encourage the family to give support in the care of the person.

There are no medical treatments that reverse the effects of dementia. Drug treatment can, however, help manage some symptoms and improve the lives of people with dementia and their families. Drugs can be used in people with dementia to treat:

  • Cognitive symptoms (symptoms that affect thinking and reasoning)
  • Behavioural symptoms (symptoms that affect behaviour)
  • Depression
  • Anxiety
  • Sleep problems.

For example, if depression is a problem, antidepressants (see Study Session 12) can be given by a doctor. Similarly, behavioural disturbances or psychosis associated with dementia can be treated by antipsychotic drugs (see Study Session 13).

15.2.2  Prevention of dementia

While it is not possible to prevent age-related dementia, there are some measures that can help the person avoid some types of dementia, as well as cardiovascular diseases, such as strokes and heart attacks. The rule here appears to be ‘What is good for your heart is also good for your head.’ You should inform people that the best ways to guard against dementia are to:

  • eat a healthy diet
  • maintain a healthy weight
  • get sufficient and regular exercise
  • drink alcohol in moderation
  • not smoke.

For detailed discussion of these disease prevention strategies please refer to Study Sessions 1, 14 and 18 of this Module.

Summary of Study Session 15

In Study Session 15, you have learned that:

  1. Epilepsy and dementia are conditions arising from problems in the functioning of the brain. Neither can be cured but treatment can significantly improve the quality of life of both sufferers and their families.
  2. There is a very large treatment gap (defined as the difference between the need for treatment and its availability) for epilepsy and dementia in developing countries, including Ethiopia.
  3. Traditional beliefs about epilepsy and dementia can result in prejudice and/or shame and limit the take-up of effective treatment. You should address such beliefs carefully and sensitively.
  4. Epilepsy can be symptomatic (when the cause is known) or idiopathic (when it is not).
  5. Knowledge of the details of an epileptic seizure could be useful to doctors in diagnosis.
  6. You should refer for immediate assessment if you suspect status epilepticus.
  7. Many people with epilepsy can lead symptom-free lives using antiepileptic drugs (AEDs) but should be monitored carefully in the community as seizures can return as a result of non-adherence to this medication.
  8. Although there is no cure, there are a range of medical and non-medical treatments for managing the symptoms of dementia.
  9. As with many physical conditions, it is important for people to maintain a healthy lifestyle.

Self-Assessment Questions (SAQs) for Study Session 15

Now that you have completed this study session, you can assess how well you have achieved its Learning Outcomes by answering these questions. Write your answers in your Study Diary and discuss them with your Tutor at the next Study Support Meeting. You can check your answers with the Notes on the Self-Assessment Questions at the end of this Module.

Read the following case study and answer the questions that follow it.

Case Study 15.1  Mrs Mulu

Mrs Mulu is a 30-year-old married mother of one. She has a history of epileptic seizures that have not been helped by her previous non-adherence to treatment. She did not take her medication because of bad side effects and because she was ashamed of her condition, as her husband’s family had told her that it was her fault for making the spirits angry. Three years ago, her failure to take her antiepileptic drugs (AEDs) resulted in the need for emergency treatment for status epilepticus. Since then you have visited her regularly and discussed the importance of medication. She now takes her AEDs and has not experienced a seizure in over two years.

However, on a recent visit she complains to you that she is again experiencing some side effects. These are different to before and make her behave as if drunk (although she has never drunk alcohol). She is also worried about her 8-year-old daughter, Meron, who has been behaving strangely in school and at home. On a number of occasions she has been found in a trance-like state, staring into the distance with fluttering eyelids. Mrs Mulu’s husband and his family believe that this is caused by possession by evil spirits because they are angry that Mrs Mulu continues to take her AEDs. Given their views and the absence of seizures, Mrs Mulu wants your permission to stop taking her medication.

SAQ 15.1 (tests Learning Outcomes 15.1, 15.2 and 15.4)

Should you give Mrs Mulu permission to stop taking her medication?

Answer

No. Mrs Mulu is already aware of the serious consequences of non-adherence to treatment. You should remind her of these (see Section 15.1.6) and ask her to describe her side effects in more detail. It could be that these are also symptoms of non-adherence – in this case, taking too much medication. This would be consistent with ‘drunken’ side effects such as unsteadiness, poor concentration, drowsiness, vomiting and double vision. Given this and her previous poor adherence to treatment, you should refer her immediately for assessment by the epilepsy specialist.

SAQ 15.2 (tests Learning Outcomes 15.1, 15.2 and 15.4)

How might you explain Meron’s strange behaviour to the family and school? What else should you do?

Answer

The description of Meron’s trance-like state suggests that she may be experiencing petit-mal seizures. You should explain this to the family and also refer her for immediate assessment (see Section 15.1.7). Taking details of these seizures (from Meron, her family and school teachers) might prove useful to this assessment (see Box 15.1). Providing a medical explanation for her condition will also counter the negative aspects of traditional beliefs (see Section 15.1.3) and help the family and school support her treatment in the community.

SAQ 15.3 (tests Learning Outcomes 15.1, 15.2, 15.3 and 15.4)

What should you do if Mrs Mulu or her daughter has a seizure during your visit? Describe both your emergency care role and what you would do after the seizure has ended.

Answer

As discussed in Section 15.1.5, the best response to a seizure is to prevent the person from self-injury by moving them away from danger, putting a pillow under their head, and placing them in the safe lateral position (see Figure 15.1). To prevent injury, objects should not be placed in the person’s mouth during the seizure. It is also important not to light matches, give the person anything to drink, or to try to stop the convulsion by force or by holding them tight.

During the seizure, it is important to make a mental note of the nature and duration of the attack, as this will be useful in assessment. If a seizure lasts longer than five minutes (or the seizures begin to come in ‘waves’ one after the other), this may be a sign of status epilepticus. In these circumstances the person should be placed in the safe lateral position, have their blood pressure checked frequently, and be referred immediately to the nearest general hospital, accompanied by a close relative or yourself.

After a seizure the person should not be allowed to wander about unsupervised until they have returned to their normal level of awareness. The person should remain under care until they have completely recovered.

First read Case Study 15.2 and then answer the questions that follow it.

Case Study 15.2  Mr Teklu

Mr Teklu is a 62-year-old man. He was once a school teacher and he and his wife were highly respected in the village. However, the couple were not blessed with children and, since his wife died four years ago, Mr Teklu has become withdrawn. He no longer recognises former pupils by name and seems to have lost all joy in life. When old friends try to talk to him he often makes little sense, saying strange things and sometimes laughing or crying for no reason. As a result, they keep away. Without support, Mr Teklu appears to be getting worse and struggles with keeping himself clean and tidy or looking after himself.

When you visit Mr Teklu at home it is clear that he is struggling to cope alone. His home is a mess and he appears undernourished. He tells you that he has been feeling depressed and uses khat and alcohol to make him feel better. This leaves him little money to buy food and he finds it hard to remember how to cook his favourite meals.

SAQ 15.4 (tests Learning Outcomes 15.1, 15.5 and 15.6)

  • a.What would you do to find out whether Mr Teklu is suffering from dementia?
  • b.How might you help Mr Teklu?
Answer

The first thing you should do in Mr Teklu’s case is to examine his circumstances. Here both his behaviour (as suggested by others in the village) and his increasingly poor ability to look after himself are consistent with dementia. To gain a clearer understanding of the seriousness of his condition, you should use the questions in Box 15.2 to test his awareness and thinking skills.

There is a range of things that can be done to help Mr Teklu. The first would be to refer him for assessment. This could lead to the provision of a diagnosis and medication to manage his symptoms, as well as any complicating factors such as depression. Following this, you should take an active role in ensuring his adherence to any treatment in the community by explaining to him why it is important to take his medication and providing tips to help him to remember to do this (see Section 15.2.1).

You should also make him understand that the use of both khat and alcohol are likely to make his condition worse by interfering with any medication. Instead, impress upon him the importance of a maintaining a healthy lifestyle and eating properly (see Section 15.2.2).

Finally, you should also seek to address the problem of Mr Teklu’s social isolation, educating others about dementia and encouraging old friends and neighbours to support him with day-to-day tasks and to monitor his wellbeing.