What are Lewy body dementias?

Lewy body dementias are conditions caused by clumps of protein, called Lewy bodies, building up in your brain. The Lewy bodies affect specific areas of the brain, which can lead to symptoms that affect your:

• memory
• thinking
• movement
• behaviour

There are 2 forms of Lewy body dementias:

1. dementia with Lewy bodies — this is when symptoms of dementia appear first, followed by symptoms of Parkinson's disease at least one year later.
2. Parkinson's disease dementia — this is when you already have Parkinson's disease and develop symptoms of dementia at least one year later.

These 2 forms of dementia are grouped together because they are both caused by damage to the brain from Lewy bodies.

Anyone can develop Lewy body dementias, but they become more common as you get older. While Lewy body dementias are more common as you get older, they are not a normal part of ageing.

What are the symptoms of Lewy body dementias?

If you have dementia with Lewy bodies or Parkinson's disease dementia, you will likely have problems with:

• thinking
• attention
• planning and problem solving
• making decisions
• behaviour
• memory
• bodily functions, such as bladder and bowel problems

Other symptoms of Lewy body dementias include:

• visual hallucinations (seeing things that are not there)
• problems with your vision
• a change in your sense of smell
• depression
• a lack of interest in your usual activities
• frequent falls
• delusions (false ideas or beliefs)

You may also experience symptoms similar to Parkinson's disease, such as:

• slowness
• stiffness
• tremors (uncontrollable shaking of your hands)
• shuffling when walking

You may also have problems with sleep. This includes shouting or moving violently in your sleep. Sleep disorders may appear years before other symptoms develop.

What causes Lewy body dementias?

Lewy body dementias are caused by abnormal clumps of protein, called Lewy bodies, building up inside your brain. These build-ups damage your neurons (nerve cells in the brain) and can cause them to die.

It's not clear what causes Lewy bodies. Some factors that may increase the chance of Lewy bodies forming include:

• age — this is the strongest risk factor for all forms of dementia, however, dementia does not happen to everyone as they age
• genetics — dementia with Lewy bodies can be passed down through families
• head injuries — a history of traumatic brain injury (TBI) may be linked to changes in the brain that cause Lewy bodies

When should I see my doctor?

You should see your doctor if you:

• or someone you care for, has signs of dementia
• are worried about changes in your memory
• suspect someone you care for has delirium (a sudden change in thinking or behaviour)

How are Lewy body dementias diagnosed?

There is no specific test for Lewy body dementias. To help diagnose Lewy body dementias, 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 to help with these questions
• will examine you, including checking your blood pressure, heart rate and body temperature
• 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 suggest further tests including:

• blood tests
• a urine test
• a magnetic resonance imaging (MRI) scan of your brain
• a computed tomography (CT) scan of your brain
• a positron emission tomography (PET) scan of your brain
• an electroencephalogram (EEG) to test your brain activity

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

How are Lewy body dementias treated?

There is currently no known cure for Lewy body dementias.

Lewy body dementias are progressive, which means the symptoms get worse over time. How quickly the disease progresses varies from person to person.

There are treatments that can help you manage the symptoms of Lewy body dementias.

Medicines

Some of the medicines used to treat the symptoms of Lewy body dementias include:

• cholinesterase inhibitors — these help with cognition and behavioural symptoms
• melatonin — this can help manage sleep disorders
• Parkinson's disease medicines — these help to improve Parkinson's disease symptoms such as rigid muscles and slow movement
• certain medicines for depression and anxiety

Some medicines have unwanted side effects. It's important to watch for side effects — treating one symptom may worsen another symptom.

Some medicines, such as antipsychotic medicines, can cause severe reactions in people with Lewy body dementias. Always check with your doctor or pharmacist before taking a new medicine.

Other treatment options

Other ways to help manage the symptoms of Lewy body dementias include:

• physiotherapy, occupational therapy and speech and language therapy
• cognitive stimulation, such as memory exercises
• physical activity, which can improve your thinking and movement
• relaxation exercises
• music based therapy
• creating structured daily routines
• respite care (short-term care)

What are the complications of Lewy body dementias?

People with Lewy body dementias may experience complications, such as:

• problems with balance and walking
• falls
• anxiety
• depression
• problems with swallowing, which can increase your risk of aspiration pneumonia (lung infections due to inhaling food or fluids)
• urinary incontinence (poor bladder control)

There are medicines and other treatments that can help with many of these complications.

People with Lewy body dementias will eventually need full time care and support.

Can Lewy body dementias be prevented?

Some cases of Lewy body dementias are due to factors that can't be changed, such as genetics.

However, there are ways you can lower your chance of developing Lewy body dementias. This includes:

• having a healthy diet and maintaining a healthy weight
• stopping smoking
• reducing how much alcohol you drink
• exercising regularly, but protect your head from injury
• keeping in contact with friends or family
• avoiding air pollution where possible
• doing memory and thinking activities, such as reading or completing crossword puzzles

It's also important to manage any conditions you have, including:

• hypertension (high blood pressure)
• diabetes
• high cholesterol
• hearing loss
• vision loss
• depression

Resources and support

Visit Dementia Australia for information on:

• Lewy body dementias
• genetics and dementia
• planning ahead if you have dementia
• younger onset dementia

Call Dementia Australia on 1800 100 500 to speak with a counsellor. They support people living with dementia as well as their families, friends and carers.

Call the National Dementia Helpline 1800 100 500 or use their webchat. They offer advice and support to family and friend carers of people with dementia.

Parkinson's Australia has more information on Parkinson's disease.

Visit My Aged Care to learn if government-funded residential respite care (short term care) is available. They also have information about Support at Home programs

Languages other than English

Mindcare Collective has videos in languages other than English, including topics such as:

• what is dementia
• how to reduce your dementia risk

Health Translations Victoria has fact sheets on dementia for patients and carers in multiple languages.

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 you 24 hours a day, 7 days a week.