Lewy Body Dementia (LBD) is an umbrella term that includes Dementia with Lewy Bodies and Parkinson’s Disease Dementia. It can affect thinking and memory, and also cause visual hallucinations (seeing things that are not there), as well as movement changes similar to Parkinson’s disease. Although it is the second most common form of degenerative dementia, it can present in different ways which means that it can be difficult to diagnose. The symptoms can also be challenging to manage, as some medications for movement symptoms can worsen thinking and memory symptoms.
If you or somebody you know has received diagnosis of LBD, or are interested in learning more about LBD, we can provide you with information and advice.
Understanding LBD
Lewy body dementia (LBD) happens when proteins called ‘Lewy bodies’ build up in the areas of the brain that control thinking, memory, visual processing and movement. Lewy bodies can be found in the brain of people with LBD and 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 Lewy bodies 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.
LBD affects different people in different ways depending on which part of the brain is affected, and ranges 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. LBD is a progressive condition and symptoms generally worsen over time. The rate at which symptoms progress varies from person to person.
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. LBD is thought to be caused by a complex interaction of genetic factors and environmental factors. Mutations in many genes, such as genes called Apoε4 and GBA, have been linked to Parkinson’s disease and LBD. However no more than 2% of people living with Parkinson’s, and likely even fewer with LBD, carry a gene with a disease-causing mutation. Overall, and particularly where there is no family history, most people with LBD will not have a hereditary illness.
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.
It is difficult to give an accurate prognosIs for LBD as it can be extremely variable from person to person. Some evidence suggests that the rate of progression in later stages may mirror the rate at which early symptoms develop. Currently there is no reliable method to predict life expectancy or rate of progression in a person with LBD. New research on treatments may also alter prognosis.
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, a 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 (Dopamine Active Transporter or ‘DaT’ 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.
See the RDS website page on getting or refining a diagnosis for further information.
I have received an LBD diagnosis – what next?
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?
On this page we have provided information on some of the early symptoms commonly associated with LBD. as well as available support.
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 have the same symptoms or progress at the same rate. The experience of LBD will vary according to factors including age, general health and the disease underlying the LBD diagnosis.
See the RDS website page on support after a diagnosis for further information. The Lewy Body Society offers support for people living with this diagnosis and has a range of resources available, including this podcast which may be helpful for people adjusting to a diagnosis.
Symptoms of LBD
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.
Low mood, depression and anxiety can be prominent in people with LBD. People may be more tearful or spend time worrying about things that wouldn’t worry them previously. These symptoms can respond well to treatment. If people notice these symptoms, they should discuss them with their GP or specialist and consider treatment with antidepressants.
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
Physiotherapists and occupational therapists can be very helpful in managing problems with movement. They can advise on aids and adaptations to the home to help the person move and stay independent. Making sure that glasses and hearing aids are regularly checked also helps.
Exercise may be helpful in improving long term outcomes in LBD. A range of different exercises is recommended and should include some aerobic exercise (such as walking or cycling) and some to help balance (such as Pilates or Tai chi).
If the person has had falls or is worried about falling, the GP may refer them to a falls prevention service. Their risk of falls may be reduced by strength and balance exercises, a sight test, a medication review and making the home safer (for example, removing trip hazards).
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.
If someone is having hallucinations or delusions, in most cases it is unhelpful to try to convince them that what they are seeing is not there, or that what they believe is untrue. What the person is experiencing is real to them at the time. Instead, carers can offer reassurance that they are there to support the person, and try distracting them.
It is important to get any glasses or hearing aids checked. Any problems with these can make difficulties with perceiving things worse. Misperceptions (different from hallucinations) can also be triggered by things in the environment such as excess noise and reflective or patterned surfaces. Therefore making changes to your environment that reduce these factors can help.
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.
Steps can be taken to help a person with LBD have more restful nights. Increasing physical exercise, having a regular bedtime and getting-up time, and reducing daytime napping can all help.
Sleep may be disturbed as a result of getting up to pass urine. To help reduce this it is a good idea to avoid alcohol, caffeine and excess drinks close to bedtime, and to keep the bedroom quiet and at a comfortable temperature. Practical steps can be taken to make the area around the bed safe – remove sharp objects and either lower the bed, or provide a soft landing mat to reduce the risk of injury. People are also encouraged to talk to their GP or their specialist about sleep problems.
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.Quiet speech can sometimes be a problem for people living with LBD. This can improve with speech and language therapy, particularly using a technique known as the Lee Silverman Voice Treatment.
People with LBD can sometimes behave in a challenging manner (with agitation or aggression, for example) which can be difficult to manage. Carers may find it useful to look for specific triggers and make environmental changes such as reducing unnecessary noise or clutter. These behaviours may also be improved by interaction with other people or through activities matched to the person’s interests, such as physical exercise or music.
Living with LBD
Support
Receiving a diagnosis of LBD can be isolating and can have an impact on not only the person living with the diagnosis, but also family members, friends and carers. It is really important that the right support is available, not only for the person with LBD, but also for the people who care about and support them. The RDS support group meetings can be a good place to start.
Support groups are a great way of accessing help, information, advice and support in a space of mutual respect and understanding. They provide opportunities to speak to professionals and ask questions, as well as for connecting with others in similar situations.
People living with LBD and their friends and family are welcome to join our London support group meetings, our small group meetings or to see what regional network hubs might be available.
Because LBD is relatively rare, many healthcare services may not have much experience in supporting people affected by it. However, you may still find it helpful to seek support from a variety of health and social care professionals such as GPs and nurses, community mental health teams and social workers, as well as the hospital. See the RDS website page on professionals for more information about what types of allied health professional support is available.
It may be hard for people with LBD to receive the correct diagnosis. This can be frustrating and distressing. 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
For more information on support available for people affected by LBD please see the information on our Support at different stages page.
Research
Some RDS members living with LBD find that contributing to research is a beneficial way of making a difference, if not for themselves, then for others who will receive this diagnosis in the future. See here for more information about research opportunities.
Strategies for managing and adapting to LBD
There are a variety of strategies that people have found useful to help them adapt to and manage the symptoms of LBD. Everyone’s experience of LBD is unique to them, and what works for some may not work for others. Please visit the symptoms and managing and adapting pages of our website for more helpful advice.
Treatment
There is currently no cure for LBD but there are treatments that can help manage symptoms and improve day-to-day life. Managing symptoms as best as possible, with or without medication, is very important in helping people with LBD to live well.
There is some evidence that a group of medications called acetylcholinesterase inhibitors, that are used to treat Alzheimer’s disease, can help with memory problems and hallucinations in LBD. Similarly, medications used for Parkinson’s disease, such as levodopa, can be used in LBD to help with motor symptoms (movement). However, levodopa can make hallucinations worse in some cases and these treatments should be monitored by a specialist.
Treatment for LBD can be problematic because certain medications, particularly antipsychotic medications, can significantly worsen LBD symptoms. The range of symptoms that comes with LBD means that people may need support from several healthcare professionals and specialists.
Please note that you should always speak to your GP or healthcare professional before taking any medical treatment. More information about drug treatments for dementia generally is also available.
Talking about your diagnosis
Knowing when and how to tell family, friends and colleagues about a diagnosis of LBD can be difficult. It can take time for people to understand and come to terms with a condition they have never heard of before. There is no right or wrong time to tell those around you, and you will know best when feels right for you.
It could be helpful to talk this through with members of our LBD Support Group who have been in a similar situation. Many members find it helpful to share their story with other people living with the same diagnosis, and there are a range of opportunities for this at the small and large group meetings we offer.
Finding the right language is also important when telling those close to you. More information about ways to approach talking about a diagnosis is also available.
Latest LBD meeting
You can view the latest LBD seminar, which features a full recording of the meeting, including research updates, clinical presentations, member stories, and a Q&A session. You can also view the slides from the presentations and the interactive session notes.
Latest LBD stories
Something Positive Out of Tragedy
LBD
The Last Laugh: Dementia and Happiness
Alan was diagnosed with dementia in 2017, and subsequently Dementia with Lewy Bodies. This is Alan’s story.
LBD
Living a new life: Des O’Sullivan
A film about Des O’Sullivan who was diagnosed with lewy body dementia (LBD) aged 60.
LBD