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Dementia with Lewy Bodies: Signs, Symptoms and Treatments

Dementia with Lewy bodies (DLB) is a progressive neurological disorder that affects an estimated 100,000 people in the UK.

It shares many of the same symptoms as Alzheimer's disease, including memory loss and confusion, but patients with DLB may also experience visual hallucinations, changes in mood and sleep patterns, and problems with movement.

While a diagnosis of dementia may be upsetting, understanding the type of dementia that you or a loved one has will help you to seek the most appropriate treatments to manage symptoms and plan for the future.

With this in mind, we explore the signs, symptoms and treatments of dementia with Lewy bodies.

What is dementia with Lewy bodies?

Dementia with Lewy bodies (DLB) is the second most common type of degenerative dementia after Alzheimer's disease, accounting for about 10-20% of all cases. Lewy bodies are abnormal deposits of the protein alpha-synuclein that build up in nerve cells in the brain. These deposits damage brain tissue which can lead to problems with thinking, movement, behaviour and mood.

Named after FH Lewy, the German doctor who first identified them, Lewy bodies can cause several symptoms, many of which are shared by those who have Alzheimer’s disease and some by Parkinson’s disease. Because of this, dementia with Lewy bodies is often wrongly diagnosed. About 1 in 10 people living with dementia have DLB.

Unlike Alzheimer's disease, which typically affects older adults over the age of 65, dementia with Lewy bodies can occur in people in their 50s and 60s, although this is still fairly rare. Men are also more likely to develop the condition than women.

What causes dementia with Lewy bodies?

While DLB is an outcome of these protein deposits which build up in the brain, it's not yet clear why the deposits develop and exactly how they damage the brain. It's thought that part of the problem is that the proteins affect the brain's usual function as they interfere with signals sent between brain cells.

Dementia with Lewy bodies usually occurs in people with no family history of the condition, although there have been rare instances where the illness seems to run in families.

What are the symptoms of dementia with Lewy bodies?

The symptoms of DLB can differ from person to person, and they may also fluctuate in severity over time. The severity of symptoms may also fluctuate during the day, depending on the person's level of activity or stress.

One of the most common early signs is problems with visual hallucinations. This means seeing things that are not there, such as people, animals or objects. People with DLB may also see patterns or lights that move or change shape.

Other early symptoms can include:

  • changes in mood and sleep patterns
  • problems with movement, such as tremor (shaking) or rigidity (stiffness)
  • a decline in thinking skills, such as memory loss, difficulty concentrating or making decisions
  • changes in behaviour, such as increased anxiety, depression or paranoia.

As the condition progresses, symptoms may become more severe and include:

  • problems with movement that make everyday tasks difficult or impossible to conduct
  • a complete loss of facial expression
  • severe confusion and disorientation
  • incontinence (losing control of bladder or bowels)
  • delusions (false beliefs) or hallucinations.

A person with DLB may also experience episodes of what is known as 'rapid eye movement sleep behaviour disorder'. This means acting out dreams while still asleep, which can be violent and result in injury.

Early diagnosis is important as it can help people receive the support they need to manage their condition. There is no cure for DLB, but treatments are available to help manage the symptoms.

If you or someone you know is experiencing any of the above symptoms, it's important to see a doctor. Many of them may be caused by other illnesses, such as infections, so it's important to get a proper diagnosis to rule these out.

How is dementia with Lewy bodies diagnosed?

There's no one test that can diagnose dementia with Lewy bodies. Instead, doctors will use a combination of medical history, physical examination, cognitive testing and brain imaging to rule out other conditions with similar symptoms.

A diagnosis of DLB is usually made after other causes of dementia have been ruled out.

Discover more about how dementia is diagnosed here.

The difference between DLB and Parkinson's disease

While DLB and Parkinson's disease share many of the same symptoms, there are some key differences between the two conditions.

People with Parkinson's disease usually experience tremors, rigidity and problems with movement, while those with DLB may not have these symptoms until later in the course of the illness. People with DLB may also experience visual hallucinations and changes in sleep patterns and mood, which are not common in Parkinson's disease.

What are the treatments for dementia with Lewy bodies?

Dementia with Lewy bodies is a progressive disease, which means the symptoms will get worse over time. There is no way to predict how fast the disease will progress or how long someone will live with the condition. However, with proper treatment and support, people with DLB can enjoy a good quality of life for several years.

Medical treatments, lifestyle changes and also talking therapies can help to support someone living with DLB.

Medications can be used to treat some of the symptoms, such as memory loss, confusion and hallucinations. Antipsychotic medications may also be prescribed to help with delusions, paranoia and other behavioural problems.

It's important to work closely with your doctor to find the right medication and dosage, as some antipsychotics can make dementia symptoms worse.

For those who suffer from problems focusing or concentrating, drugs such as donepezil, rivastigmine, and memantine may be prescribed.

The drug levodopa, which can be used to treat Parkinson’s disease, is sometimes given to those who suffer from problems with movement. Levodopa is less effective in DLB than in Parkinson’s disease. However, it does improve movement problems and helps to prevent falls in around a third of patients with DLB.

As DLB can cause sleep problems, a GP may also prescribe medications that help you to get a better night's rest too.

Caring for someone with DLB

In the preliminary stages of this type of dementia, many people may be able to live safely at home with some support. The SureSafe dementia tracker is designed to help those living with any type of early-stage dementia retain their independence for as long as possible.

With features such as geo-fencing, which will alert people caring for the patient should they wander outside the home, and fall alerts, a dementia tracker can help to give peace of mind to both the person with DLB and their family and friends.

As the disease progresses, people with DLB may need more help with activities of daily living such as bathing, dressing and eating. They may also need supervision to prevent accidents.

It's important to keep in mind that everyone experiences DLB differently and each person will progress at their own rate. Some people live for many years with the condition while others may only live for a few years. There is no way to predict how the disease will progress.

It's important to get support for both the person with DLB and their caregivers. Caring for someone with dementia can be very demanding and challenging. Caregivers may benefit from attending support groups or counselling.

What research is being done into DLB?

There is currently no cure for DLB and no way to prevent the disease from progressing. However, researchers are working hard to find new ways to treat the symptoms and improve the quality of life for those living with DLB.

Some current areas of research include:

• exploring new medication options to treat DLB symptoms

• developing new ways to diagnose DLB earlier

• looking into the potential causes of DLB

• investigating whether certain lifestyle changes can help to prevent or delay the onset of DLB.

A diagnosis of dementia with Lewy bodies can be devastating for both the person with the condition and their loved ones. However, with proper treatment and support, it is possible to live well with this type of dementia.

At SureSafe we are committed to helping those living with dementia to retain their independence for as long as possible while providing peace of mind to their loved ones. We have a range of personal alarms which are designed to give back freedom to anyone affected by dementia. Get in touch with us on 0800 112 3201 to find out more.

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