LBD affects different people in different ways. The symptoms that people with LBD will experience depend on which part of the brain is affected, and range from issues with movements to visual problems and sometimes hallucinations. Although day to day memory can also be affected, it is usually less severely affected than in people living with typical Alzheimer’s disease.
Common symptoms include:
- problems with concentrating and staying alert
- fluctuations in thinking and memory abilities – with difficulties varying from day to day or even hour to hour
- visual hallucinations – often of animals or people
- slower or stiff movements; some people have problems with falling
- problems with bladder or bowel functions
- sleep disturbances
About 10-15% of all patients with dementia have LBD. This means that approximately 130,000 people in the UK have LBD. It affects both men and women, although more commonly men, and it usually affects people over the age of 65.
LBD is sometimes called Dementia with lewy bodies (DLB), which is a different name to describe the same condition. Lewy body disease is the umbrella term that includes LBD and Parkinson’s disease dementia.
Causes
LBD is caused by a build-up of proteins called ‘Lewy bodies’ in the brain. These same proteins can also be found in people with Parkinson’s disease. Scientists still don’t know exactly how they cause dementia but they may lead to a loss of connections between brain cells.
The symptoms that people with LBD will experience depend on where the Lewy bodies are found. When they are mostly found in the deeper parts of the brain, they lead to problems with movements and Parkinson’s disease. When they are found in the outer parts of the brain they tend to lead to LBD.
Diagnosis and testing
In the early stages it can be difficult to diagnose LBD and people can initially be diagnosed as having Alzheimer’s disease or Parkinson’s disease. Other things that can cause similar symptoms, including infections or the side effects of medication, also need to be ruled out.
Getting the right diagnosis is particularly important if LBD is suspected. This is mainly because people with LBD can benefit from some medications, but also react very badly to others.
In order to diagnose LBD, the doctor will talk to the person, and someone who knows them well. They will ask about the person’s medical history, when the symptoms started, and how these are affecting their life now. A neurological examination (looking at reflexes or stiffness and balance, for example) will also be done.
If the person shows signs of LBD, brain scans can also be used to help clarify the diagnosis. Computed tomography (CT) or magnetic resonance imaging (MRI) scans may be done to rule out brain conditions (such as a brain tumour or bleed) which can sometimes cause similar symptoms.
If there is still doubt, a more specialised brain scan might be carried out. This can confirm a diagnosis of LBD if it shows loss of function of a particular type of cells (dopamine nerve cells) at the base of the brain.
It is important that healthcare professionals are better informed about LBD and equipped to recognise the symptoms. Rare Dementia Support is working to improve awareness of LBD and other rare dementias and to train healthcare professionals. For more information and resources visit our Learning page.
By increasing awareness and understanding of LBD, we hope to ensure that healthcare professionals and communities are better equipped to support people affected by a diagnosis of LBD. Help us by sharing your stories and contacting us at contact@raredementiasupport.org.
