What is Lewy body disease?

Lewy body disease is caused by clumps of protein, called Lewy bodies, developing in the brain. Lewy bodies are also found in the brains of people with Parkinson’s disease.

Lewy body has only recently been accepted as a disease in its own right, and often occurs at the same time as Alzheimer’s disease, Parkinson’s disease and/or vascular dementia. For a diagnosis of Lewy body disease, a person must have:

• visual hallucinations
• tremors and stiffness, as with Parkinson's disease
• a fluctuating mental state.

It is not known why Lewy bodies develop, but the disease does not run in families. 

Symptoms

The symptoms of Lewy body disease include:

• difficulty concentrating and paying attention
• extreme confusion
• difficulties judging distances
• hallucinations
• Parkinsonism
• a mental state that switches rapidly between thinking clearly and being confused
• delusions
• depression
• disturbed sleep, acting out dreams
• fainting spells, unsteadiness and falls
• problems with understanding, thinking, memory and judgement.

Diagnosis

There is no specific test for Lewy body disease. To make a diagnosis, a specialist neurologist, geriatrician or psychiatrist will assess a person’s symptoms and mental abilities, and do blood tests to rule out similar conditions. They may do brain scans, such as an MRI or CT scan, or a SPECT (single-photon emission computerised tomography) or PET (positron emission tomography) scan.

Scans can show degeneration in the brain, but the Lewy bodies can only be found by examining brain tissue after death. 

Treatment

There is no cure for Lewy body disease, but a doctor may treat the symptoms with:

• Alzheimer's disease medications to reduce hallucinations and behavioural problems
• Parkinson's disease medications to improve rigid muscles and slow movement
• antidepressants
• sleep medicines.

Some medicines, such as antipsychotics, can make symptoms worse and may be dangerous. There are, however, other ways of dealing with symptoms, including:

• learning to manage a person's behaviour
• learning how to calm the person down
• changing their environment to help them function
• creating daily routines
• using therapies, such as physiotherapy, occupational therapy and speech and language therapy
• providing cognitive stimulation.

People with Lewy body disease usually need help at home and eventually care in a nursing home. The disease progresses differently in different people. After they develop symptoms, people live on average for another 6 - 12 years, although some live much longer.

Who can help?

• Dementia Australia
• National Dementia Helpline (1800 100 500)
• Help and support for carers

Not sure what to do next?

If you are still concerned about any symptoms, why not use healthdirect’s online Symptom Checker to get advice on when to seek medical attention.

The Symptom Checker guides you to the next appropriate healthcare steps, whether it’s self-care, talking to a health professional, going to a hospital or calling triple zero (000).