Dementia with Lewy bodies, also known as Lewy body dementia, is a common form of dementia estimated to affect more than 100,000 people in the UK.
The term “dementia” describes a loss of mental ability (cognitive impairment) associated with gradual death of brain cells. It’s rare in anyone younger than 65.
Symptoms usually develop gradually and become more severe over the course of several years.
People with dementia with Lewy bodies not only experience problems with memory and judgement, like those with Alzheimer’s disease, but are also likely to have difficulties with concentration and visual perception (recognising objects and making judgements about where they are in space).
They may experience:
People with the condition tend to swing from a state of alertness to drowsiness or staring into space. These extreme changes may be unpredictable and happen from hour to hour or day to day.
Read more about the symptoms of dementia with Lewy bodies
Dementia with Lewy bodies is caused by deposits of an abnormal protein called Lewy bodies inside brain cells. These deposits, which are also found in people with Parkinson’s disease, build up in areas of the brain responsible for things such as memory and muscle movement.
It’s not clear why the deposits develop and how exactly they damage the brain, but it’s thought they disrupt the brain’s normal functions by interfering with chemical signals transmitted from one brain cell to another.
Dementia with Lewy bodies usually occurs in people with no family history of the condition, although there have been reports of rare cases that seem to run in families.
If you think you may have early symptoms of dementia, it’s a good idea to see your GP. If you’re worried about someone else, encourage them to make an appointment, and perhaps suggest that you go along with them.
Your GP can do some simple checks to see if there is chance you could have dementia, and they can refer you to a memory clinic or another specialist clinic if necessary.
At one of these clinics, you will be asked about your symptoms and have a physical check-up and memory test. You may also have blood tests and brain scans.
The results of these checks and tests will give your doctor a good idea as to whether your symptoms are caused by dementia with Lewy bodies, another type of dementia, or something else entirely.
Read more about how dementia with Lewy bodies is diagnosed
There is no cure for dementia with Lewy bodies or any medication that will slow it down.
However, a few different medicines can be effective in controlling some of the symptoms. In particular, acetylcholinesterase inhibitors (used to treat Alzheimer’s disease) have been shown to improve symptoms such as hallucinations and confusion in some people.
Supportive treatments – such as physiotherapy, occupational therapy, and speech and language therapy – can help improve any problems with movement, everyday tasks, and communication.
Psychological therapies and specific dementia activities, such as memory cafés, can also help with memory loss, confusion, and feelings of disorientation.
Read more about treating dementia with Lewy bodies
How quick dementia with Lewy bodies progresses varies from person to person. Home-based help will be needed, and some people will eventually need residential care in a nursing home.
The average survival after the time of diagnosis is similar to that of Alzheimer’s disease – around five to eight years. However, as with Alzheimer’s disease, this can be highly variable.
If you or a loved one has been diagnosed with dementia, remember that you are not alone. The NHS, social services, and voluntary organisations will be able to provide advice and support to help you and your family.
The symptoms of dementia with Lewy bodies usually develop gradually and become more severe over the course of a few years.
Like other forms of dementia, the condition causes problems with:
People with dementia with Lewy bodies may also have other symptoms that can help distinguish it from other types of dementia, such as:
These symptoms can make daily activities very difficult and can lead to further health problems, such as injuries from falls, and chest infections caused by accidentally inhaling food instead of swallowing it.
If you think you may have early symptoms of dementia, it’s a good idea to see your GP. If you’re worried about someone else, encourage them to make an appointment and perhaps suggest that you go along with them.
Symptoms of dementia can have a number of different causes. Your GP will be able to carry out some simple checks to try to find out what the cause may be, and they can refer you to a specialist for further tests if necessary.
Read more about diagnosing dementia with Lewy bodies
Confirming a diagnosis of dementia can be difficult, particularly when the condition is in its early stages. This is because many of the symptoms of dementia can also be caused by other conditions.
For dementia with Lewy bodies to be diagnosed correctly, you will have a number of tests and assessments, including:
Some of these tests can be carried out by your GP. Some will be carried out by other specialists, such as a neurologist (an expert in treating conditions that affect the brain and nervous system), an elderly care physician, or a psychiatrist with experience of treating dementia.
The Mini Mental State Examination (MMSE) is widely used to help test mental ability.
The MMSE can be used to assess a number of different mental abilities, including:
The MMSE involves a series of tasks, which together carry a maximum score of 30 points. Example tasks include:
The MMSE is not a test to diagnose dementia, but it’s useful for assessing the level of mental impairment a person with dementia may have.
There’s currently no cure for dementia with Lewy bodies, but treatments can help manage the symptoms.
First of all, your future health and social care needs will need to be assessed and a care plan drawn up.
This is a way of ensuring you receive the right treatment for your needs. It involves identifying areas where you may need some assistance, such as:
Read more about care plans
Medication cannot stop the progression of dementia with Lewy bodies, but it can sometimes help reduce the symptoms.
Acetylcholinesterase inhibitors, such as donepezil (Aricept), galantamine (Reminyl) or rivastigmine (Exelon), may help improve hallucinations, confusion, and drowsiness in some people.
These medicines work by increasing levels of the chemical acetylcholine in the brain, which improves the ability of the brain cells to send signals to each other.
Common side effects of acetylcholinesterase inhibitors include feeling and being sick, diarrhoea, headaches, fatigue (extreme tiredness), and muscle cramps.
Other medications that may help control some of the symptoms of dementia with Lewy bodies include:
Antipsychotics, such as haloperidol, should be avoided wherever possible, and should only be used to treat severely challenging behaviour that is putting you or others at risk of harm. This is because they can cause a range of serious side effects, including rigidity and immobility.
If antipsychotics are needed, they will be prescribed at the lowest possible dose, for the shortest possible time, by a specialist experienced in treating dementia with Lewy bodies.
In addition to medication, there are a number of therapies and practical measures that can help make everyday living easier for someone with dementia. These include:
Read more about living well with dementia
If you have been diagnosed with dementia, you will need to make arrangements for your care that take into account the gradual decline in your mental abilities. This should include ensuring that your wishes are upheld if you’re not able to make decisions for yourself.
You may wish to draw up an advance decision after first receiving a diagnosis of dementia. This makes your treatment preferences known now, in case you are unable to do this in the future.
You may also want to consider giving a relative lasting power of attorney. This is the power to make decisions about you if you are unable to.
Read more about managing legal affairs for someone with dementia
If you care for someone with dementia, you may find it helpful to read more about:
Visit the Telecare Self-Check online tool to find the right support for you in your area. This easy to use online tool allows you to find helpful information on telecare services that could help you live independently at home for longer.
Last updated:
06 March 2024