What are Lewy body dementias?

Lewy body dementias are conditions where round clumps of protein (called Lewy bodies) build up in your brain. The Lewy bodies affect specific areas of the brain. This can lead to symptoms that affect your memory, thinking, movement and behaviour.

There are 2 forms of Lewy body dementias:

1. dementia with Lewy bodies
2. Parkinson's disease dementia

What are the symptoms of Lewy body dementias?

In both dementia with Lewy bodies and Parkinson's disease dementia, people have problems with:

• thinking
• attention
• planning and problem solving
• making decisions
• behaviour
• movement
• body functions (such as bladder and bowel problems)

Your memory may not be too affected to start with, and thinking problems can come and go.

Other symptoms of Lewy body dementias can include:

• visual hallucinations (seeing things that are not there)
• problems with vision (seeing clearly) and judging distance
• slowness, stiffness and tremors, shuffling when walking, and stooping over, similar to Parkinson's disease
• delusions

You may also have problems with sleep. This includes acting out your dreams, which may result in shouting out or thrashing about in your sleep. This sleep disorder may happen years before other symptoms develop.

What causes Lewy body dementias?

Lewy body dementias are caused by abnormal clumps of protein, called Lewy bodies, developing inside the brain. This damages the nerve cells and can cause them to die.

The cause of Lewy bodies is not known. Age is the strongest risk factor in all forms of dementia; but dementia is not a normal part of ageing.

Dementia with Lewy bodies also seems to have a genetic component.

When should I see my doctor?

You should see your doctor if you:

• are worried about changes in memory and thinking problems
• suspect someone you care for has delirium
• suspect you or someone you care for shows signs of dementia

How are Lewy body dementias diagnosed?

Your doctor will ask about your symptoms and how long you have had them. It may help to bring a family member or friend with you when you see your doctor.

Your doctor will examine you, including checking your blood pressure, heart rate and body temperature.

Your doctor may ask you to do a Mini-Mental State Examination. This is a short test to check for problems with thinking and memory.

Your doctor may also suggest tests including:

• blood tests
• an MRI scan of your brain
• a CT scan of your brain

Your doctor may arrange for you to have other types of scans of your brain, such as:

• SPECT (single-photon emission computerised tomography)
• PET (positron emission tomography)

These scans can show degeneration (shrinking) in your brain.

There is no specific test for Lewy body disease.

Your doctor may refer you to a specialist for further tests and treatment.

How are Lewy body dementias treated?

There is currently no cure for Lewy body dementias, which progress (get worse) over time. How quickly the disease progresses varies from person to person.

However, there are treatments that can help.

Medicines

There are no specific medicines to stop your condition progressing. But there are treatments that can help with some of the symptoms.

Some of the medicines used to treat symptoms are:

• Alzheimer's disease medicines — to reduce hallucinations and help with thinking and alertness
• medicines to help with sleep
• Parkinson's disease medicines — to improve rigid muscles and slow movement

Some of the medicines have unwanted side effects. Watch for side effects as treating one symptom may worsen another symptom.

Antipsychotic medicines can cause severe reactions in people with Lewy body dementias. Always check with your doctor or pharmacist before taking new medicines.

Other treatment options

Other treatment options can include:

• physiotherapy, occupational therapy and speech and language therapy
• providing cognitive stimulation, such as memory exercises
• physical activity, which can improve your thinking, movement, symptoms and mood
• relaxation exercises
• changing your immediate environment (for example, reducing clutter and noise)
• creating structure and daily routines

Can Lewy body dementias be prevented?

No therapies or changes in behaviour can prevent Lewy body dementias.

In general, you can lower your chance of developing dementia by:

• eating a healthy, balanced diet
• exercising regularly
• maintaining contact with your friends and family
• doing memory and thinking activities, such as reading, completing crossword puzzles or playing a musical instrument
• getting enough sleep

Complications of Lewy body dementias

People with Lewy body dementias can have complications such as:

• problems with balance, walking and falls
• anxiety
• depression
• problems with swallowing, which can increase your risk of pneumonia
• urinary incontinence

There are medicines and other treatments that can help with complications such as these.

Resources and support

• Dementia Australia has information on dementia. You can call the National Dementia Helpline 1800 100 500 or use their webchat.
• Parkinson's Australia has information on Parkinson's disease and you can call their infoline on 1800 644 189.

You can also call the healthdirect helpline on 1800 022 222 (known as NURSE-ON-CALL in Victoria). A registered nurse is available to speak with 24 hours a day, 7 days a week.