WHAT IS DEMENTIA WITH LEWY BODIES?

Dementia with Lewy Bodies (or Lewy Body Dementia or even Lewy Body Variant of Alzheimers) accounts for around 10% of all dementias, although this may be because it is often misdiagnosed. It shares many similar symptoms with both Alzheimers and Parkinson's Disease, hence the confusion when first diagnosing it.

DLB affects around 100,000 people in the UK alone and represents about 4% of all people with dementia (but could be as high as 10%). Whilst it shares many symptoms with other forms of dementia, it also increases the difficulty people have with their concentration and visual cues, including perception and recognition.

It will affect men and women more or less equally and, like other forms of dementia, usually only occurs after the age of 65 (it's very rare in anyone younger than that).

Of course, the key to this particular condition are the Lewy bodies. The what??? Lewy bodies are tiny deposits of alpha-synuclein protein that develop in nerve cells. This build up is also linked to Parkinson's Disease. They are named after the Doctor who first discovered them, Frederic Lewy.

THE SYMPTOMS

The symptoms of Lewy Body Dementia are similar to Alzheimer's disease, and include:

  • Slow movements, stiffened limb joints or shaking.
  • Dizziness.
  • Hallucinations.
  • Sleep problems.

People with DLB tend to experience extreme mood swings. They can go from being awake and alert to staring into space or looking like they're in a daze, sometimes from hour to hour or many times during the course of a day.

WHAT CAUSES DEMENTIA WITH LEWY BODIES?

It isn't totally understood about why Lewy bodies appear or how they contribute to the condition, but how they affect the person with it is dependant on where the Lewy bodies occur in the brain. For example, if they build up predominately at the base of the brain, it will impact on movement much more.

Often the problems of impaired movement and cognitive abilities occur at the same time.

WHAT TREATMENTS ARE AVAILABLE?

Sadly, like other forms of dementia, there is no known cure for DLB. Treatments will be focussed on making the lives of those with the disease more comfortable. This will include medication to help with their cognitive, psychiatric and motor symptoms.

Despite the hallucinations that may occur, Doctors tend not to prescribe antipsychotic medication because the risk of neuroleptic sensitivity could actually worse the symptoms. Instead they opt for acetylcholinesterase inhibitors.


If you (or someone you know) lives with dementia with lewy bodies, there may be some organisations on our Where To Turn pages that can help you. If not, and you know of one, please let us know and we'll look into it.

Also, if you'd like to share your (or their) experiences of living with dementia with lewy bodies with our community so they can better understand how it feels, please take a look at our 'Men Tell' section.