Encephalopathy

Overview

Encephalopathy (say: en-SEF-uh-LOP-uh-thee) is a medical word for a change in the way the brain works. It is not one single disease. It is a sign that something else in the body is affecting the brain — for example an infection, a liver or kidney problem, or not enough oxygen. Because it has many possible causes, the experience can be very different from person to person. In many cases, once the cause is found and treated, the brain starts to work normally again. Sometimes changes can be longer lasting, and support with memory and thinking helps.

The word covers so many different problems that exact numbers are hard to give. Some types are seen often in hospital — for example, confusion caused by a serious infection or by liver or kidney problems. Other types are rare.

Anyone can be affected, from babies to older adults. It is more often seen in people who already have liver disease, kidney disease or diabetes, in people with serious infections, in people who are very unwell in hospital, in people who drink a lot of alcohol, and in people who are frail or malnourished. Children can be affected too, especially with certain infections or inherited conditions that affect how the body handles energy and chemicals.

Symptoms

Common symptoms

• Confusion or being 'not quite with it'
• Trouble concentrating or following a conversation
• Memory problems that have come on recently
• Feeling unusually sleepy or drowsy
• Changes in personality or mood — irritability, withdrawal, or acting out of character
• Poor sleep, or being awake at night and sleepy in the day
• Slurred speech
• Shaky hands or a flapping tremor when the arms are held out
• Clumsiness or being unsteady on the feet
• In more serious cases, extreme sleepiness, difficulty waking, or unconsciousness

Symptoms in children

• Being much sleepier than usual, or hard to wake
• Poor feeding or refusing feeds
• Unusual, high-pitched crying or being very irritable
• Feeling floppy, or stiff and jumpy
• A seizure (fit)
• Vomiting along with unusual sleepiness
• Not responding to you in the way they normally do

Symptoms in older adults

• Sudden confusion that was not there before (sometimes called delirium) — this is a medical emergency in an older person
• Being withdrawn, quiet or 'not themselves'
• New falls or unsteadiness
• Memory problems that appeared quickly rather than gradually
• Losing interest in eating or drinking
• Sleeping much more, or being awake and restless at night

Causes

Main causes

• Serious infections, including infections of the brain itself
• Liver disease, where waste products the liver normally clears build up in the blood
• Kidney failure
• Not enough oxygen reaching the brain, for example from heart or lung problems
• Blood sugar that is too low or much too high
• An imbalance of salts and minerals in the blood
• Alcohol, heavy drinking over time, or alcohol withdrawal
• Lack of thiamine (vitamin B1), often linked with alcohol use or poor nutrition
• Thyroid problems that are severe
• Severe dehydration
• Very high blood pressure
• Poisons such as carbon monoxide, or harmful levels of certain metals
• Side effects of medicines, or problems after stopping a medicine
• Head injury, stroke, bleeding in the brain, or a brain tumour
• Long-lasting seizures
• Severe illness such as major burns or being very unwell in intensive care

Risk factors

• Already having liver or kidney disease
• Diabetes
• Drinking a lot of alcohol
• Being older or frail
• A weakened immune system, for example from illness or certain treatments
• Poor nutrition or not eating and drinking enough
• Taking several medicines, or starting a new one
• A serious infection or being in hospital with another illness
• High blood pressure or long-term heart and lung disease
• A recent head injury

When to see a doctor

See a doctor urgently if:

• Any sudden change in someone's thinking, behaviour or alertness
• Confusion that keeps coming back
• Someone becoming much sleepier than normal
• A seizure, even a short one
• A shaky tremor, clumsiness or unsteady walking that is new or getting worse
• Not being able to keep fluids down, or signs of dehydration
• New symptoms after starting a medicine

Book a routine appointment if:

• Memory or concentration problems that have been building up slowly
• Changes in sleep pattern, mood or personality that worry you or your family
• Ongoing tiredness that is affecting daily life
• If you have liver or kidney disease and notice any change in how clear-headed you feel

Diagnosis

A doctor starts by talking to you (and, if you are confused, to someone who knows you well) about what has changed and when. They will check your alertness, memory, speech and movements, and look for clues such as jaundice, a tremor, or signs of infection. Because encephalopathy is caused by something else, most of the work is in finding that cause.

Tests that may be done

• Blood tests to check the liver, kidneys, blood sugar, salts and minerals, infection markers and vitamin levels
• A blood oxygen level check
• Urine tests
• A chest X-ray or heart tracing if a lung or heart problem is suspected
• A CT or MRI scan of the brain to look for injury, bleeding, stroke or tumour
• An EEG (a painless recording of the brain's electrical activity)
• A lumbar puncture (spinal fluid test) if an infection of the brain is possible
• Sometimes more specialist tests, depending on what the first results show

What to expect at your appointment

Some results come back within hours; others take a few days. If you are very confused or sleepy, you may be looked after in hospital while tests are done, so staff can keep you safe and watch for changes. Bring a list of all medicines, and if possible have a family member or friend with you — they can help fill in details you may not remember.

Treatment

Treatment works on two levels: supporting the brain and body while the cause is found, and then treating that cause. In hospital this might mean oxygen, fluids, close monitoring and help with eating and drinking. Many people improve quite quickly once the underlying problem is corrected.

Self-care at home

• Follow the treatment plan your healthcare team gives you — recovery often depends on treating the cause properly
• Rest and protect your sleep, especially in the early weeks
• Avoid alcohol while you recover and while the cause is being sorted out
• Drink enough fluids unless your doctor has told you to limit them
• Do not drive, cycle or operate machinery if you have had confusion or seizures until your doctor says it is safe
• Ask your pharmacist or doctor to review your medicines if you take several
• Keep a simple note of symptoms, and ask a family member to help spot changes you might miss
• Attend all follow-up appointments, even when you feel better

Medical treatments

Treatment is aimed at the cause. If an infection is responsible, the team will use medicines to fight it. If the body's salts, sugar or fluid levels are out of balance, these are corrected carefully. If the liver or kidneys are struggling, treatment focuses on supporting them and helping the body clear waste products. Oxygen, fluids, nutrition support and close monitoring are common. In some situations a specialist may recommend treatments to reduce harmful build-up in the blood, or advice from a liver or kidney team. Medicines are chosen and adjusted by your healthcare team — never start, stop or change any medicine on your own.

When is surgery considered?

Surgery is rarely the main treatment for encephalopathy. It may be needed when a specific cause is found, such as a brain tumour, bleeding in the brain, or a blocked tube or shunt that needs correcting. Your specialist team would discuss this with you if it applied.

Living with this condition

Recovery can take weeks or months, and it is normal to feel tired and to find thinking harder than before. Build in rest breaks, keep days predictable, and use lists, notes and phone reminders. Family and friends can help by gently pointing out changes and by taking on tasks that need sharp thinking for a while. Ask your doctor when it is safe to return to work, driving and exercise.

Lifestyle tips

• Keep a regular sleep routine — going to bed and getting up at similar times helps the brain recover
• Stay physically active in a gentle way, building up slowly
• Avoid alcohol, or keep well within your doctor's advice
• Stay well hydrated
• Keep up with treatment for any long-term condition such as liver disease, kidney disease, diabetes or high blood pressure
• Have your medicines reviewed regularly, and check with a pharmacist before taking anything new, including over-the-counter products
• Get help early for infections rather than waiting

Diet and exercise

Eating well supports recovery. If liver disease is involved, what you eat matters and a dietitian can give personal advice — do not cut out protein on your own, because the body needs it. Aim for regular meals, plenty of vegetables and fruit, and enough fluid. Gentle activity such as short walks or light household tasks is good, and you can build up as you feel stronger. Ask your team what is right for your situation.

Mental health and emotional wellbeing

A change in how your brain works can be frightening, both for you and for the people caring for you. It is common to feel frustrated, anxious or low, especially while you wait for answers or while you recover. If you or someone you care for is having thoughts of self-harm or suicide, contact your local emergency number or a crisis line in your country straight away. Feelings like these are treatable, and help is available.

Prevention

Some types can be prevented and some cannot. You can lower your risk by looking after long-term conditions, limiting alcohol, staying hydrated, eating well, treating infections early, and having your medicines reviewed — especially if you take several. If you have liver or kidney disease, ask your team what warning signs to watch for and what to do if they appear.

Vaccines

Routine vaccinations, and vaccines for hepatitis A and B where a clinician advises them, help prevent some infections that can affect the brain. Ask your doctor or pharmacist which vaccines are recommended for you.

Screening programmes

There is no general screening test for encephalopathy. People with liver disease are often monitored for early signs, so keep your appointments and mention any changes in sleep, mood, concentration or alertness.

Complications

If left untreated

• Confusion and drowsiness getting worse
• Seizures
• Falls and injuries caused by unsteadiness or poor judgement
• Chest infections from difficulty swallowing or coughing
• Longer-lasting problems with memory, attention and daily tasks
• Loss of consciousness or coma in severe cases

Long-term outlook

The outlook is different for everyone and depends heavily on the cause. Many people make a full recovery once the cause is treated, particularly when it is found quickly. Some notice memory or concentration problems that take longer to settle, and a few types — such as encephalopathy linked to liver disease — can come back and need ongoing care. With good follow-up, support and treatment of the underlying condition, most people can look forward to getting back to their usual lives.

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