When given a diagnosis of LBD, people naturally ask what will happen next. What challenges might they face and when? What support might be available?
While we try our best to provide general guidance on how abilities may change during the course of LBD, it is important to bear in mind that not everyone will experience the same symptoms or progress at the same rate.
Early symptoms
Lewy body dementia (LBD) can affect thinking and memory, as well as vision and movement. Symptoms can be mild in the beginning and tend to progress over time.
Cognitive symptoms (thinking)
Attention, alertness and visual processing may be affected in the following ways:
- becoming slower to respond
- visual problems such as difficulty reading clocks
- difficulty with judging distances
- struggling with planning and organising
- difficulty with day to day memory
It is important to remember that these problems can be unpredictable and go up and down from day to day, even hour to hour. These fluctuations can be unpredictable.
Motor symptoms (movement)
Movement can be affected in similar ways to those in Parkinson’s disease. For example:
- movements may become slower, or more stiff
- facial expressions can be blank
- limbs may shake
- more prone to falls
Visual hallucinations (seeing things that are not really there)
Visual hallucinations can occur such as:
- mistaking a coat for a person
- imagining seeing detailed forms of people or animals
People with LBD can also experience auditory hallucinations (such as hearing things that are not real). However, this is less common.
These hallucinations may seem real to the person living with LBD and can sometimes be distressing. Hallucinations can improve with adjustments to medications. However it is advised that people discuss this with a specialist in case the treatments they are taking are triggering or making their hallucinations worse. For many though, these are not generally troublesome and would only need treatment if they became distressing.
People living with LBD can also sometimes experience delusions, which means that they believe ideas which are not true.
Sleep symptoms
People with LBD may also have problems with sleep. This can happen years before other problems develop. The most common sleep problem is people having vivid dreams and acting out their dreams. This is called REM sleep behaviour disorder. If this is causing disturbances for other members of the family, there are treatments that can be tried to calm these symptoms.
Other symptoms
People living with LBD can also lose their sense of smell or experience constipation, dizziness or urinary incontinence. LBD is a progressive condition and symptoms generally become worse over time. The rate at which symptoms become worse can vary from person to person.
There are many strategies that people living with LBD have found to be helpful in managing their symptoms. You can learn about some of these on our Living with LBD page. You may also find our FAQs section useful.
Community support
We run a LBD Support Group for everyone affected by LBD. This includes people with a diagnosis, carers, family and friends. Meetings provide an opportunity to meet others in similar situations as well as a range of professionals to get advice and support. Information on upcoming meetings can be found on our Meetings page.
As the symptoms of LBD vary so much it can sometimes take some time for people with LBD to receive their diagnosis. This can be frustrating and distressing. By increasing awareness and understanding of LBD, we hope to ensure that the medical profession, healthcare sector and communities are better able to support people affected by a diagnosis of LBD. You can help us by sharing your stories and contacting the RDS team at contact@raredementiasupport.org.
