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Lewy body dementia is an overarching term for a set of complex and challenging conditions that can be mistaken for Alzheimer’s disease<\/a> due to the overlap in symptoms. This means it may be misdiagnosed. However, getting an accurate diagnosis<\/a> as early as possible will enable the right support to be put in place to help manage its progression and maintain the person\u2019s quality of life. <\/span><\/p>\n Our dementia specialist Admiral Nurses<\/a> explain what Lewy body dementia is, its subtypes and how to manage the condition. <\/span><\/p>\n Lewy bodies are abnormal clumps of protein that develop in nerve cells in the brain. The reasons for this are not yet fully understood, although research is ongoing. <\/span><\/p>\n Lewy bodies affect the normal functioning of brain cells. They can build up in any part of the brain but are most common in the areas responsible for thought, movement, visual perception, sleep and alertness. <\/span><\/p>\n Lewy body dementia is an umbrella term for two different types of dementia: dementia with Lewy bodies and Parkinson\u2019s dementia<\/a>. The main difference between the two types of Lewy body dementia is when specific symptoms first occur. In dementia with Lewy bodies, usually cognitive changes will happen first, while in Parkinson\u2019s dementia, usually physical changes will happen first. <\/span><\/p>\n Lewy bodies are present in people who have Parkinson\u2019s, usually in the areas of the brain responsible for movement. Not everyone with Parkinson\u2019s will develop dementia, but about one third will, with the risk increasing the longer people live with the condition. <\/span><\/p>\n Dementia with Lewy bodies is caused by a build-up of Lewy bodies in the areas of the brain that control alertness, visual perception and thinking. This interrupts the connections between brain cells and can eventually stop them from working. It also reduces the chemicals that are needed in the brain to function properly. <\/span><\/p>\n In the early stages, Lewy body dementia is often mistaken for Alzheimer\u2019s disease, as some of the symptoms are similar <\/span>\u2013 for example, problems with thinking and perception. However, it differs from Alzheimer\u2019s disease in that it can particularly affect the person\u2019s movement (Parkinsonism), and can cause hallucinations<\/a>, delusions<\/a>, and changes in alertness. <\/span><\/p>\n The symptoms of dementia with Lewy bodies are complex and may differ depending on whether a person has dementia with Lewy bodies or Parkinson\u2019s dementia. Not everyone will experience all the symptoms or develop them at the same time. <\/span><\/p>\n In dementia with Lewy bodies, cognitive changes usually happen first. These can include: <\/span><\/p>\n These symptoms tend to occur at least one year before, or at the same time as, the person develops problems with movement. <\/span><\/p>\n In Parkinson\u2019s dementia, physical changes happen first. These include difficulties with movement (Parkinsonism) such as tremors, rigidity or slowness. Other problems may include sleep disturbance, dizziness and poor balance, changes in bowel or bladder function, difficulty regulating body temperature and a loss of sense of smell. These symptoms usually develop one year or more before cognitive changes become apparent. <\/span><\/p>\n A person with dementia with Lewy bodies may experience changes in their mental function, including: <\/span><\/p>\n Memory problems are often less common in the early stages<\/a> than in some other forms of dementia. <\/span><\/p>\n Dementia with Lewy bodies may cause changes in behaviour such as sudden changes and fluctuations in alertness \u2013 people may stare blankly into space for periods of time, seem drowsy and lethargic and spend a lot of time sleeping. As the condition progresses, some people experience periods of unresponsiveness. <\/span><\/p>\n Physical symptoms tend to be more pronounced in Parkinson\u2019s dementia than Lewy body dementia, particularly in the early stages. They include movement problems such as: <\/span><\/p>\n Other physical symptoms can include (although will not be experienced by everyone): <\/span><\/p>\n Psychological symptoms often occur in dementia with Lewy bodies and may include: <\/span><\/p>\n Dementia with Lewy bodies accounts for 10-15% of diagnoses of dementia, although some studies suggest it may be up to 20%. Around 10% of people with young onset dementia<\/a> (where symptoms develop before the age of 65) have Lewy body dementia. <\/span><\/p>\n Getting an accurate diagnosis<\/a> of Lewy body dementia is important to ensure the person receives the right treatment and support. This process begins with seeing the GP. If they believe the person is showing signs of Lewy body dementia, they should refer them to a memory clinic or dementia service and\/or a movement disorder\/Parkinson\u2019s service. This may depend on which symptoms appear first. <\/span><\/p>\n The diagnostic process includes taking a family and medical history, asking the person (and a family member or other person close to them, if possible) about their symptoms, and assessing their physical health. The person carrying out the assessment should ask about: <\/span><\/p>\n Basic cognitive tests may be carried out to check the person\u2019s visual\/spatial abilities and memory, alongside an assessment of motor (physical) function, eg tremors, problems with gait (how the person walks) and rigidity. <\/span><\/p>\n If the diagnosis is not clear following specialist assessment, a specific scan may be required to measure levels of the chemical dopamine, which are usually low in people with 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. <\/span><\/p>\n Investigations for other symptoms of Lewy body dementia may include: <\/span><\/p>\n Lewy body dementia can be difficult to diagnose in the early stages because its symptoms often overlap with Alzheimer\u2019s disease or psychosis (a psychological condition where the person sees, hears or believes things that are not real). Many cases are initially misdiagnosed or overlooked because of this, but as more symptoms develop,<\/span>\u202fsuch as visual hallucinations, movement problems or sleep disturbances,\u202fdoctors can usually identify Lewy body dementia more accurately. <\/span><\/p>\n If you think the person has been misdiagnosed or their condition has changed, ask the GP to make a referral for further assessment. This may be with a neurologist for motor symptoms or a dementia specialist for cognitive or psychological symptoms. <\/span><\/p>\n 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. <\/span><\/p>\n Some of the medications<\/a> used to treat Alzheimer\u2019s 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 middle stages, but do not help everyone. <\/span><\/p>\n 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. <\/span><\/p>\n Medications used for Parkinson\u2019s may be helpful, but again, caution is required as certain medications or higher doses may make hallucinations worse. <\/span><\/p>\n If you have any concerns about the introduction of a new medication or change in treatment or notice any side effects, discuss this with the person\u2019s GP or specialist as soon as possible. <\/span><\/p>\n Other treatments focus on symptom control and are detailed below. <\/span><\/p>\n Physiotherapy can help with managing some of the symptoms of Lewy body dementia. Exercises to strengthen the leg muscles can improve posture and coordination and teach the person safer movement strategies. Stretching and gentle aerobic exercise can also help reduce pain from muscle stiffness. <\/span><\/p>\n Music and art therapy can help to improve mood, reduce agitation and enhance communication. Music in particular is known to stimulate memory while songs with a steady beat can improve gait and reduce freezing episodes. Read more about music and dementia<\/a>. <\/span><\/p>\n Activities designed to exercise and improve specific cognitive functions like memory and problem-solving can help slow the decline in a person\u2019s cognitive abilities. This is sometimes referred to as cognitive stimulation therapy. These activities include puzzles, memory games and computer-based programs. Word games and sorting tasks can also help reduce apathy and provide a sense of accomplishment. <\/span><\/p>\n It is hard to predict how quickly Lewy body dementia will progress, and each person will have their own experience, so it is better to focus on maintaining quality of life and enjoying time together than on how quickly they will deteriorate. However, it is generally considered to progress in three stages<\/a>. <\/span><\/p>\n In the early stages<\/a> of Lewy body dementia, people can often manage simple tasks but may struggle with complex activities such as finances and driving. They may experience disturbances in their perception and can misinterpret things, sometimes leading to visual hallucinations, but often retain insight into what is happening. Fluctuations in awareness or thinking are common, and people may appear to have lost focus or concentration. Up to 90% of people with Lewy body dementia are found to have experienced sleep disturbances before their diagnosis. <\/span><\/p>\n In the middle stages<\/a> of Lewy body dementia, the person will usually need more assistance with things such as dressing, bathing and preparing meals. They may have difficulty recognising familiar places or people and may need supervision because of the risk of falls and hallucinations. The person may struggle with communication and experience increasing anxiety, low mood and fluctuations in awareness or concentration. <\/span><\/p>\n In the later stages<\/a> of Lewy body dementia, a person experiences an increasing decline in cognitive and physical abilities. They are likely to have difficulty with verbal communication<\/a> and may become unable to recognise their surroundings or loved ones. The person may eventually be unable to leave their bed and require full-time care. They may still experience hallucinations, even if they cannot express that this is happening. They may also experience difficulties swallowing and be susceptible to infections. <\/span><\/p>\n The progression of Lewy body dementia can vary significantly from person to person. Over time, most people will need support at home, and some may eventually need to move into a nursing home. <\/span><\/p>\n With support, a person with Lewy body dementia can maintain their quality of life for as long as possible. Strategies that may help include: <\/span><\/p>\nWhat is a Lewy body?<\/a> <\/span><\/h2>\n
How Lewy bodies affect the brain <\/span><\/h3>\n
The connection between dementia and Lewy bodies<\/a> <\/span><\/h2>\n
Parkinson\u2019s dementia <\/span><\/h3>\n
Dementia with Lewy bodies <\/span><\/h3>\n
Lewy body dementia and Alzheimer\u2019s disease <\/span><\/h3>\n
Signs and symptoms of dementia with Lewy bodies<\/a> <\/span><\/h2>\n
Early signs <\/span><\/h4>\n
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Cognitive symptoms <\/span><\/h3>\n
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Behavioural symptoms <\/span><\/h3>\n
Physical symptoms <\/span><\/h3>\n
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Psychological symptoms <\/span><\/h3>\n
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How common is Lewy body dementia? <\/a><\/span><\/h2>\n
Diagnosis of Lewy body dementia<\/a> <\/span><\/h2>\n
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Challenges of diagnosing Lewy body dementia <\/span><\/h3>\n
Treatment for Lewy body dementia<\/a> <\/span><\/h2>\n
Medications <\/span><\/h3>\n
Physiotherapy <\/span><\/h3>\n
Music and art therapy <\/span><\/h3>\n
Cognitive training <\/span><\/h3>\n
Progression of dementia with Lewy bodies <\/a><\/span><\/h2>\n
Early stage <\/span><\/h3>\n
Middle stage <\/span><\/h3>\n
Late stage <\/span><\/h3>\n
Prognosis <\/span><\/h3>\n
Living with Lewy body dementia <\/a><\/span><\/h2>\n
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