Lewy body dementia (LBD) is an umbrella term for two different types of dementia: dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD).
Lewy body dementia is a progressive, challenging condition, which is thought to account for
15-20% of cases of dementia. It is more common in people over the age of 65 but also accounts for around 10% of cases of young onset dementia (where symptoms develop before the age of 65).
In the early stages, Lewy body dementia is often mistaken for Alzheimer’s disease, which means it can be misdiagnosed. However, it differs from Alzheimer’s in that it can particularly affect the person’s movement (Parkinsonism), and can cause hallucinations, delusions, changes in alertness and sleep disturbances.
Lewy body dementia is caused by abnormal clumps of protein (called Lewy bodies) gathering inside brain cells. These can build up in many parts of the brain but particularly in the areas responsible for thought, movement, visual perception, sleep and alertness. Lewy bodies are present in people who have Parkinson’s disease, usually in the areas of the brain responsible for movement. Not everyone with Parkinson’s will develop dementia, but the risk increases the longer someone lives with the condition. The main difference between the two types of Lewy body dementia is when certain symptoms first occur. In dementia with Lewy bodies (DLB), cognitive changes happen first. These include:
• changes in thinking
• difficulties with visual perception (eg spatial awareness, misinterpreting visual information)
• memory loss
• managing everyday tasks
• staying alert
These symptoms tend to occur at least one year before, or at the same time as, the person develops problems with movement. In Parkinson’s disease dementia (PDD), physical changes happen first. This includes difficulties with movement (Parkinsonism) such as tremors, rigidity or slowness. These symptoms are experienced one year or more before the cognitive changes.
Lewy body dementia symptoms are complex and may differ slightly depending on whether a person has DLB or PDD. Not everyone will experience all of the symptoms or develop them at the same time.
However, the most common or ‘core’ symptoms include:
Other psychological symptoms can include (although will not be experienced by everyone):
Other physical symptoms can include (although will not be experienced by everyone):
It is important for someone with Lewy body dementia to get an accurate diagnosis so they receive the right treatment and support.
The GP should refer the person to a memory or dementia service and/or a movement disorder/
Parkinson’s service or specialist (neurologist). This may depend on which symptoms appear first.
The diagnostic process should include assessing the person’s physical health and asking both them and a family member, if possible, questions about their symptoms.
The person carrying out the assessment should ask about:
A short cognitive assessment may be carried out which examines visual/spatial abilities and memory, plus an assessment of motor function eg tremors, problems with gait (how the person walks) and rigidity.
If the diagnosis is not clear following this assessment, a specific scan may be required to measure levels of the hormone dopamine, which are usually low in Lewy body dementia. This is called a SPECT scan or DaTSCAN. It involves having an injection of a special radioactive substance, usually into a vein in the arm, which helps show how much dopamine is being transported in the brain. The dose of radiation is very small and is quickly eliminated from the body.
Investigations for other symptoms may include:
People with Lewy body dementia may be offered medication, alongside other treatments, to help with their symptoms. These will not stop or reverse the progression of the condition but may improve quality of life for them and their families and carers.
Some of the medications used to treat Alzheimer’s disease may
help with the cognitive symptoms of Lewy body dementia, for example by reducing distressing hallucinations and improving concentration and memory problems. These are usually most effective in the early- to mid- stages but do not help everyone.
It is important to know that many people with Lewy body dementia are particularly sensitive to medications known as antipsychotics, which are sometimes used to treat hallucinations. Only certain types, known as atypical antipsychotics, should be used, and even then, with extreme caution.
Medications used for Parkinson’s disease may be helpful but again, caution is required as certain medications can make hallucinations worse.
If you have any concerns about the introduction of a new medication or change in treatment or notice any side effects, it is important to discuss this with the person’s GP or specialist as soon as possible.
Other treatments focus on symptom control and include:
Getting the correct diagnosis and treatment
If someone has Lewy body dementia, a correct diagnosis is important to ensure they receive the right treatment and management and close monitoring of their condition.
If you think the person has been misdiagnosed or their condition has changed, ask for further assessment. This may be with a neurologist for motor symptoms (physical symptoms) or a dementia specialist (old-age psychiatrist)
for cognitive or psychological symptoms. Please see Sources of support on p14 for our information on getting a diagnosis of dementia.
A diagnosis of dementia can have a significant emotional impact on the person with the condition and their family members, so make sure you seek support from local services. Peer and social support groups can be very helpful for sharing experiences. Please see Sources of support on p14 for more information on the emotional impact of a dementia diagnosis.
It is important for the person with Lewy body dementia to have regular reviews of their treatment, medication and any changes in symptoms. Try keeping a diary of their symptoms for a week and share this with the professionals overseeing their care, especially if there has been a change in treatment.
Environment and activies
There are a number of things you can do to simplify and improve the quality of life of someone with Lewy body dementia.
Please see Sources of support on p15 for our information on making the home safe and comfortable for a person with dementia.
Keeping physically and mentally active is important, and an occupational therapist and/or physiotherapist will be able to provide specific guidance on beneficial and meaningful activities. You can ask the person’s GP or specialist for a referral.
Cognitive stimulation therapy (CST) can be helpful, particularly for people in the earlier stages of dementia. This involves taking part in activities and exercises designed to improve memory, problem-solving skills and language, and may be available via the local memory service or dementia services.
It is helpful to focus on activities the person enjoys, with adaptations to make them more manageable if required, such as gardening; helping with cooking, cleaning, and folding washing; and exercising – if the person has mobility problems, which are common in Parkinson’s disease dementia, they could do seated exercises.
If the person is in employment, encourage them to speak to their employer about reasonable adjustments to help them continue to work, if they wish to.
If the person drives, they are legally obliged to tell the DVLA (DVA in Northern Ireland) and their insurance company about their dementia diagnosis. The changes in vision and spatial awareness associated with Lewy body dementia may impair their driving ability.
However, a dementia diagnosis does not necessarily mean the person will have to stop driving straight away – they may be asked to take a driving assessment and/ or issued a shorter licence with a reassessment when it expires. See Sources of support on p14-15 for information on staying healthy with a diagnosis of dementia and employment and dementia.
Responding to symptoms Dementia can affect how someone sees and experiences the world due to physical changes in the brain. This may lead to the person having difficulty recognising and managing their emotions due to low mood, apathy or frustration.
Understanding that changes in emotions are part of the person’s dementia can be an important first step in helping you understand and respond to them sensitively.
There are practical steps you can take to help the person feel more at ease and cope with some of the more challenging symptoms.
Hallucinations and delusions Seeing the person that you care for in unexplained distress can be worrying and upsetting. It is important to try to respond to any signs of distress or unexplained behaviour as calmly as possible.
Ask the person what is happening and listen to what they say, or look for signs in their behaviour. Try not to disagree with what they are saying, even if you know it is not true. Sometimes going along with what they are saying, but neither agreeing nor disagreeing, is the best response.
Ask the person how they are feeling and offer comfort and reassurance if possible. Please Sources of support on p14 for information on false beliefs and delusions.
If the hallucinations or delusions are persistent and/or distressing, speak to the GP or specialist about possible treatments. Some treatments for dementia known as ‘cholinesterase inhibitors’ may help reduce hallucinations.
If the person takes Parkinson’s medication, this may need reviewing as it can increase hallucinations. Antipsychotic medication is generally not recommended but small doses of certain drugs may be tried if the person is in distress, with careful monitoring for any side effects such as severe stiffness or rigidity.
Sleep disturbance can be extremely difficult for both the person with Lewy body dementia and their family. The person with dementia may experience vivid nightmares or involuntary, jerky movements as dreams are acted out. The person may be unaware of this, or may wake up suddenly feeling frightened or distressed. This can also impact on the sleep of other people in the family, particularly the person’s spouse or partner.
Good sleep hygiene techniques may ease sleep disturbance.
The three main motor or movement disorder symptoms related to Parkinson’s disease are tremor, stiffness and slowness of movement. Tremor is less common in dementia with Lewy bodies but symptoms such as ‘freezing’ (ie getting stuck) and poor balance can increase the risk of falls and cause discomfort or pain.
Other motor symptoms can include:
Medication used for Parkinson’s may help reduce some of the motor symptoms but needs monitoring regularly by a neurologist or Parkinson’s specialist/Parkinson’s nurse.
Exercise is particularly important for people with Parkinson’s symptoms and can help with other symptoms such as sleep problems, mood and cognitive problems. Specific exercises may be recommended for different movement problems and advice should be sought from a physiotherapist.
Support with maintaining independence and managing tasks may be provided by an occupational therapist. A speech and language therapist can offer advice about speech and/or swallowing problems.
If you need referrals to any of the above services, contact your GP and/or specialist for advice.