Lewy Body Dementia
Lewy body dementia 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 be the cause for 10-15% of people with dementia. In the early stages, it is often mistaken for Alzheimer’s disease and 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.
Causes of Lewy Body Dementia
Lewy Body Dementia (LBD) is caused by abnormal clumps of protein (called Lewy bodies) gathering inside the brain cells. These Lewy bodies can build up in many parts of the brain but particularly in the arears responsible for thought, movement, visual perception and those regulating 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 DLB (dementia with Lewy bodies), cognitive changes happen first, or at the same time as physical changes. This includes: changes in thinking, difficulties with visual perception (ie, spatial awareness, misinterpreting visual information) memory loss, (managing everyday tasks etc.), and problems with sleep. These symptoms tend to occur at least one year before, or at the same time as, problems with movement.
In PDD (Parkinson’s disease dementia), physical changes happen first. This includes difficulties with movement (Parkinsonism), such as: tremor, rigidity or slowness. These symptoms are experienced first at least one year or more before cognitive changes.
Symptoms of Lewi Body Dementia
There are several signs and symptoms of Lewy Body Dementia. It is crucial to recognize those at an early stage so that they can be treated and controlled. Here are some of the symptoms of LBD:
- Hallucinations: Visual hallucination is one of the early signs of Lewy body dementia. People with LBD might see things that are not there. However, these hallucinations are not always visual. They might hallucinate different sounds, touch, or smell as well.
- Movement problems: Lewy body disease causes mobility issues such as slowed movements, muscle stiffness, feeling tremors or shakiness, falling, and similar issues. These symptoms are also prevalent in Parkinson’s disease.
- Confusion and changes in alertness: Cognitive fluctuations such as difficulty in concentration, attention, and feeling confused about relatively simple things are signs of LBD.
- Mood and emotional changes: LBD patients may experience mood swings and emotional changes. They might feel anxious, apathetic, lack motivation, and develop depression. All these factors can impact their quality of life a great deal.
- A decline in thinking ability: People with Lewy body dementia may have problems with critical thinking, problem-solving, planning, and other things which require attention to detail and analytical thinking.
- Sleep disorder: Sleep difficulty is also one of the Lewy body dementia symptoms. That includes insomnia, daytime sleeping, difficulty waking up, loss of consciousness, and more.
- Memory issues: LBD patients experience loss of memory and difficulty remembering small things or even faces of people.
Lewy Body Dementia Diagnosis
It is important for someone with LBD to get an accurate diagnosis so they get the right treatment and support. Your doctor should refer you to a memory or dementia service and/or a movement disorder/Parkinson’s service (neurologist). Where you are assessed may depend on which symptoms appear first. The diagnosis process should include assessing the person’s physical health, and asking questions about symptoms from the person, and a family member, wherever possible.
The person carrying out the assessment should ask questions about changes in memory, ability to carry out usual activities, changes in behaviour and mood, alertness, seeing things and sleep patterns. A short cognitive assessment may be carried out which examines visual/spatial abilities as well as memory, plus an assessment of motor function ie, presence of tremor, problems with gait (how they walk) and rigidity.
If the diagnosis is not clear following this assessment, a scan may be required to measure dopamine levels, which are usually low in LBD. This is called a SPECT scan (single photon emission computed tomography) or a DATSCAN. This involves having an injection of a radioactive substance, which helps show how much dopamine is being transported in the brain.
Lewy Body Dementia Treatment
Treatment People with LBD may be offered medication, as well as other treatments, to help with their symptoms. These will not stop or reverse the course of the disease, but can improve the quality of life for them and their families and carers.
Some of the medications used to treat Alzheimer’s disease can help with the cognitive symptoms of LBD and can help reduce distressing hallucinations, concentration and memory problems. These are usually most effective in early or moderate phases, but do not help everyone.
Importantly, many people with LBD are particularly sensitive to medications known as antipsychotics, which are used to treat hallucinations. Only certain types, known as atypical antipsychotics, should be used, with extreme caution. Medications used for Parkinson’s 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 your doctor or specialist as soon as possible. Other treatments focus on symptom control and include: physiotherapy, occupational therapy, counselling, groups, cognitive stimulation therapy, music and activities.