All about Lewy Body Dementia

Dementia with Lewy bodies is the third most common disease that causes dementia, and the second most common cause of dementia in older people, accounting for approximately 130,000 affected individuals in the UK according to the Lewy Body Society. Lewy bodies are deposits of abnormal proteins inside brain cells and are named after Dr Friedrich Lewy who first discovered them under the microscope in 1912.

What is Lewy body dementia?

Dementia is caused by different diseases that affect the brain. In Lewy body dementia tiny clumps of proteins known as Lewy bodies appear in the nerve cells of the brain causing Lewy body disease, which can lead to Lewy body dementia. It is a progressive, complex and challenging condition which is thought to account for 10%–15% of all those with dementia.

What causes Lewy body dementia?

Dementia with Lewy bodies is caused by Lewy body disease which causes the decay of brain tissues. This decay is caused by the build-up of abnormal proteins called Lewy bodies, which are also found in people with Alzheimer’s disease and Parkinson’s disease.

It is not always clear why someone develops Lewy body dementia. Lewy bodies in the brain affect substances called neurotransmitters. A neurotransmitter is a chemical that helps send signals from one nerve cell to another.

One type of neurotransmitter is dopamine which helps send signals that cause muscle movement. Lewy bodies interfere with the making of dopamine. A lack of dopamine causes movement problems, such as those seen in Parkinson’s disease.

Acetylcholine is another type of neurotransmitter. It is found in the parts of the brain responsible for memory, thinking and processing information. When Lewy bodies build up in these areas, they use up the acetylcholine, causing symptoms of dementia.

Who is at risk of Lewy body dementia?

Age is the biggest risk factor for the development of Lewy body dementia. People over the age of 65 years become increasingly at risk of developing the condition. About two in 100 people aged 65 to 69 years have dementia, and this figure rises to 19 in 100 for those aged 85 to 89 according to Alzheimer’s Research, although it can also affect people younger than this.

Our ethnicity can also change our risk, with certain black and Asian minority ethnic groups having a higher risk of developing conditions such as:

• High blood pressure.
• High cholesterol.
• Diabetes.

These conditions can then increase the risk of developing other types of dementia such as Alzheimer’s disease, and there is evidence to suggest they are risk factors for the development of Lewy body dementia too.

Men are more likely to get Lewy body dementia than women.

People with a family history of Parkinson’s disease or Lewy body dementia have a higher risk of also developing the condition.

Having a traumatic head injury or repeated injuries may increase the risk of developing Parkinson’s disease later in life, but it is not known whether this also applies to Lewy body dementia.

Some people may find adopting certain lifestyle changes can go a long way to improving health, lowering the risk of cardiovascular diseases, and it is likely that they may help in reducing dementia risk too.

These lifestyle changes include:

• Not smoking.
• Keeping cholesterol and blood pressure under control.
• Being active daily and exercising regularly.
• Maintaining a healthy weight.
• Eating a healthy balanced diet.
• Drinking fewer than 14 units of alcohol per week.
• Keeping your mind active – mental activity helps to build your cognitive reserve. This is your brain’s ability to cope and keep working, even in the face of damage from diseases.

Types of Lewy body dementia

Lewy body dementia is an umbrella term for two different types of dementia. These are dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD).

A significant difference between the two diseases is the location of the Lewy bodies in the brain. In Parkinson’s disease dementia they are found mainly in the substantia nigra which is in the mid-brain and is a part of your brain that helps control your movements; whereas in dementia with Lewy bodies they are more widely distributed throughout the cerebral cortex, the outer layer that lies on top of your cerebrum, and is involved in functions such as reasoning, emotion, thought, memory, language and consciousness.

What are the signs of Lewy body dementia?

The difference between the two types of Lewy body dementia is when certain symptoms first occur. In dementia with Lewy bodies, cognitive changes happen first, or at the same time as physical changes.

This includes:

• Changes in thinking.
• Difficulties with visual perception, which is, spatial awareness, misinterpreting visual information.
• Memory loss, which is managing everyday tasks etc.
• Problems with sleep.

These symptoms tend to occur at least one year before, or at the same time as, problems with movement.

In Parkinson’s disease dementia, physical changes happen first.

This includes:

• Difficulties with movement.
• Tremor.
• Rigidity or slowness.

These symptoms are experienced first, at least one year or more before cognitive changes.

Lewy body dementia symptoms are complex and not everyone will experience the same symptoms at any time.

However, the most common symptoms include:

• Difficulty with organising, planning and carrying out everyday tasks, such as handling money, using a phone or computer, using household appliances such as a kettle or washing machine etc.
• Difficulty with remembering events or names of familiar people – this may be more pronounced in later stages.
• Recurring visual hallucinations (seeing things that are not there) – these can be pleasant or upsetting.
• Disturbed sleep, known as rapid eye movement (REM) sleep disorder, in which people are restless and can experience intense dreams or nightmares.
• Sudden changes and fluctuations in alertness – people may stare blankly into space for periods of time, seem drowsy and lethargic and spend a lot of time sleeping.
• Slowed movement, difficulty walking, shuffling or appearing rigid or freezing.
• Tremors, usually in the hands, particularly during movement problems with balance, and being prone to falls.

Although not experienced by everyone, other psychological symptoms can include:

• Delusions – These are a fixed belief about something that is not true. These often have a theme in Lewy body dementia, a common delusion being Capgras syndrome, in which the person believes that a friend or relation has been replaced by an imposter. Other common themes are feeling as though someone is watching them, or is out to get them. These delusions can be linked with hallucinations, for example seeing people in their home.
• Depression – This is persistent low mood and feelings of hopelessness which can result in poor sleep, loss of appetite and loss of interest in previous activities.
• Apathy – This is where someone appears to be indifferent or lacks initiative. This can occur independently from depression.
• Anxiety – This is intense feelings of fear or unease which can result in a racing heart, sweating and panic attacks.

Although not experienced by everyone, other physical symptoms can include:

• Low blood pressure, dizziness on standing up.
• Urinary incontinence, particularly at night.
• Constipation.
• Swallowing problems.
• Impaired sense of smell or taste.
• Increased salivation or ‘drooling’.
• Excessive sweating.
• Problems with speech and/or saying specific words.

Some people can have mixed dementia, where they are affected by two different diseases at the same time. Someone may be diagnosed as having dementia with Lewy bodies and Alzheimer’s disease, or dementia with Lewy bodies and vascular dementia. This means they will be affected by symptoms of both types of dementia.

How is Lewy body dementia diagnosed?

There are many causes of memory and thinking problems, including vitamin deficiencies and thyroid disorders, so if you have concerns you should in the first instance make an appointment with your GP.

When you go to the doctor they will:

• Ask you about your symptoms and how they are affecting you.
• Check your medical history and general health.
• Do some physical tests like blood pressure and a balance or reflexes test.
• Ask you to do some memory and thinking tests.
• Run blood and urine tests to rule out other causes of your symptoms.

These tests will help to identify the likely cause of your symptoms. If the doctor suspects you have dementia, you may be referred to a memory clinic or another specialist clinic where more in-depth tests can be done.

Such as:

• Brain scans such as magnetic resonance imaging (MRI) or computerised tomography (CT) can help to diagnose dementia or rule out other causes of symptoms.
• Doctors may scan the nerve cells in a person’s heart, as these can show similar changes to those in the brain of a person with Lewy bodies dementia.
• A SPECT scan may also be used. This type of scan can show changes in the brain that are more common in this type of dementia. However, when symptoms of dementia with Lewy bodies or Parkinson’s disease dementia are quite clear, someone may not need this test.

It is important for someone with Lewy body dementia to get an accurate diagnosis so they get the right treatment and support.

Treatment for Lewy body dementia

Lewy body dementia has no cure.

Treatment involves managing the symptoms and it may include:

• Medication.
• Physical therapy.
• Psychotherapy.
• Behavioural interventions or strategies to manage the disease.
• Supportive care.

People with Lewy body dementia may be offered medication and other interventions to help with their symptoms. These will not stop or reverse the course of the disease but can improve the quality of life. Some of the medications used to treat Alzheimer’s disease can help with the cognitive symptoms of Lewy body dementia and can help reduce distressing hallucinations, concentration and memory problems.

These drugs are called:

• Donepezil.
• Rivastigmine.
• Galantamine.
• Memantine.

These drugs boost chemicals that help brain cells to communicate with each other, alleviating some of the memory and thinking symptoms in Lewy body dementia. However, they are usually most effective in early or moderate phases but do not help everyone.

Agitation and aggression can be common symptoms in dementia. For people who experience these symptoms, a doctor will first assess the person’s health and environment. This could help to identify any causes or triggers of agitation or aggression, so these can be addressed first before trying medication. A doctor may prescribe antipsychotics to treat these symptoms.

People who experience movement symptoms in Lewy body dementia can be treated using physiotherapy or with levodopa, a drug used for Parkinson’s disease.

Non-drug treatments, such as cognitive therapy, exercise and group activities, may also help with some of the symptoms of Lewy body dementia. Talking therapies, such as counselling, can help someone come to terms with their diagnosis or discuss their feelings.

Cognitive behavioural therapy (CBT) may be offered if the person develops depression or anxiety.

Anyone who has been diagnosed with Parkinson’s dementia will have their Parkinson’s medication reassessed because the medication can make the symptoms of dementia worse. But reducing the dose or stopping these drugs may mean that the motor symptoms of Parkinson’s are not as well controlled as before. For this reason, treating the Parkinson’s dementia symptoms needs to be balanced with managing the physical symptoms.

The dementia medications used for Parkinson’s dementia are the same as those used to treat Alzheimer’s. They are called cholinesterase inhibitors. Some people find they help with their symptoms. Very low doses of antipsychotics or neuroleptics might be prescribed to treat severe mood and behavioural symptoms, such as aggression.

Physiotherapy, speech therapy and occupational therapy may help to manage the symptoms of Parkinson’s dementia.

Support for Lewy body dementia

There are ways to support and help to improve and maintain the general well-being, mental abilities and mood of people with Lewy body dementia.

These include:

• Arranging and maintaining social interaction with the person’s friends or family, or with a local group. Try telephone and/or video calls to stay in touch.
• Having a structured environment and keeping to a routine; a pinboard or chalkboard for notes and visual reminders is also useful.
• Making environmental changes such as lighting, visual stimulation, aromatherapy or music therapy can help with symptoms as can replacing or removing patterned carpets, rugs and curtains. Difficulties with visual perception (that is, how we see things) are common in Lewy body dementia, and plain floors will cut down on the risk of tripping and falling.
• Mirrors can be confusing, especially for someone experiencing hallucinations, so consider removing these from the person’s home.
• Exercise is particularly important for people with Parkinson’s symptoms and can help with managing other symptoms such as sleep problems, mood and cognitive problems. Specific exercises may be recommended for different movement problems. An occupational therapist and/or physiotherapist will be able to give friends and family members supporting a person with Lewy body dementia specific guidance on therapeutic activities to alleviate certain symptoms.
• Any change in the person’s physical health such as incontinence, difficulty swallowing or constipation should be reported to their GP so that specific treatment and advice can be provided.

Sleep disturbance can be extremely distressing and can have a negative impact on both the person with the diagnosis of Lewy body dementia and those that care for them. Good sleep hygiene techniques can help to ease sleep disturbance.

These include:

• Reducing caffeine intake, alcohol and heavy meals prior to bedtime.
• Maintaining a regular routine, including some exercise and/or activity during the day.
• Reducing the frequency and length of daytime napping, if possible.
• Ensuring a comfortable sleeping environment – not too hot or too cold – and trying to reduce noise and/or bright lights.
• Providing pain relief before bed, if the person is in pain or discomfort.

Caring for someone with dementia can be challenging and exhausting, so recognise that you can’t do everything yourself, you will need extra help. Don’t be afraid to ask for help from family and friends. They might think you are coping well and not realise the extent of your caring responsibilities. People often like to feel useful and may be pleased if they are asked.

You can request a Carer’s Assessment from Social Services, as you may be entitled to respite care for the person with dementia, or other assistance to help you in your caring role. You should consider respite care for yourself; this is any care arrangement designed to give rest or relief to unpaid carers.

Everyone needs a break from time to time. Carers are no different, and it is important that they are able to have a rest, whether it is a short break to run errands or meet friends, or longer time spent away. Breaks are good for a carer’s physical and mental well-being and can enhance the relationship with the person they care for.

The person with dementia may also benefit from the break. It could provide social interactions and opportunities to pursue hobbies and interests, remain involved and active, and form new relationships. You could ask your GP’s surgery or a social worker if there are any local sources of support, for example, carers’ support groups or volunteer befrienders who could visit the person at home to give you a break.

Final thoughts

There are a number of sources for information, advice and support for anyone concerned about their own Lewy body dementia health or for those supporting someone with Lewy body dementia, including:

• Lewy Body Society 0800 888 6678.
• Parkinson’s UK 0808 800 0303 has local advisers and local groups that can offer advice and support to anyone affected by Parkinson’s dementia.
• Alzheimer’s Society 0333 150 3456.
• Dementia UK 0800 888 6678.
• Alzheimer’s Research UK 0300 111 5555.
• NHS Respite Care.
• The NHS Smoke free National Helpline is free to call on 0300 123 1044.