What is dementia with Lewy bodies?

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Dementia isn’t a single disease, the word describes a set of symptoms that includes problems with memory, reasoning, communication and problem solving. Many people think that dementia and Alzheimer’s disease are the same thing, but Alzheimer’s is only one of many causes of dementia. As many as ten to fifteen percent of people affected may have dementia with Lewy bodies.

Dementia with Lewy bodies can often be misdiagnosed as Alzheimer’s disease – but different dementias show different patterns of progression. Although there’s sadly no cure for either of the conditions, it’s helpful to fully understand your disease so that you know what to expect, what support and care you may need, and what therapies are likely to be effective.

What are Lewy bodies?

Lewy bodies are tiny deposits of a protein that build-up in the brain’s nerve cells, especially the areas that affect the memory, thought and movement. They were named after the German doctor that discovered them and are implicated in causing a form of dementia and Parkinson’s disease.

Scientists don’t fully understand the processes that cause the damage, however the proteins are associated with low levels of neurotransmitters, which are the chemicals that carry messages between nerve cells. The loss of connection between the nerve cells eventually leads to cell death and progressively deteriorating symptoms. The specific signs and symptoms depend on the area of the brain that has been affected.

What happens in Lewy body dementia?

Lewy body dementia (LBD) is a progressive condition, meaning that symptoms gradually get worse over time. People with the disease will notice the decline in mental function, memory and understanding that affects all people with dementia. However, individuals with Lewy body dementia may also experience some of the more confusing and upsetting symptoms of dementia including visual hallucinations and sleep disruption. The movement problems of Parkinson's disease, including shaking, stiffness and slow movement are also prevalent. Symptoms include:

Problems with memory and thought

Increasing forgetfulness, difficulties with language and communication, and loss of concentration are common in Lewy body dementia. It can also impair your ability to recognise faces.

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Seeing things that are not there

Vivid visual hallucinations can be an early symptoms of Lewy body dementia. Individuals may see animals, people or objects that aren't really there. Other hallucinations can include sound, smell and touch- all can be very distressing for the person affected and for those that love and care for them.

Problems with movement

Damage to the part of the brain that controls movement can cause muscle stiffness, a tremor, a slowing down of motion and a shuffling walk. Visuospatial awareness can be impacted, resulting in problems judging distances. In combination with the movement restriction, this can increase the risk of accidents and falls.

Difficulties regulating body functions

The autonomic nervous system controls many of our important body functions including blood pressure, heart rate, sweating and digestion. The part of the brain responsible for this is often damaged in LBD, leading to dizziness, fainting and problems with constipation.

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Sleep disturbance

Lewy body dementia can significantly affect sleep. Individuals affected may have long naps in the day. Sleep behaviour disorder can cause problems during the rapid-eye-movement phase of sleep, which results in people physically acting out their dreams. This can lead to flailing and kicking of arms and legs, which can be very difficult for anyone sharing the bed.

Problems with mood and motivation

Many people with LBD struggle with concentration, they may feel apathetic and spend a lot of time staring into space. These symptoms can come and go, so that there may be some periods where the individual is bright and alert, followed by spells of confusion and drowsiness. Depression is also common during the course of the illness.

Reading about some of the symptoms of the disease can be frightening, however the progression of dementia with Lewy bodies varies between people. Getting early support can help make life a little easier. Home-care can adapt to your evolving needs, so that you can continue to live safely in your own home. Your doctor may be able to prescribe medication to reduce hallucinations, help with sleep and ease movement and tremor. You may also find that physiotherapy and occupational therapy can support your function, so that you can get on with everyday tasks and maintain your wellbeing and independence for as long as possible.

Dr Jane Gilbert
Experienced health writer and TV presenter
Jane has over 20 years’ experience as a health writer and TV presenter. Jane writes on a wide variety of clinical and care topics – from explaining the latest studies and research to unpacking conditions and discussing treatment options. Jane holds a MBBS degree from Imperial College, London and spent seven years working in the NHS.