Eight facts about lewy body dementia

Written by Zenya Smith21/06/23


Dementia Care

1. It’s a fairly common type of dementia

Over 100,000 people in the UK are affected by Lewy Body dementia (DLB). 

2. While it shares a lot of symptoms, it’s different to Alzheimer’s disease

Alzheimer’s disease is the most common form of dementia, and Lewy Body Dementia is the second. Different types of dementia have different signs and symptoms. However, DLB and Alzheimer’s share a lot of characteristics  including, problems with thinking and issues with problem-solving, decision-making and acquiring new skills, meaning that those affected need specialist dementia care.

According to the NHS, Alzheimer’s is more likely to present memory problems than DLB.

People who have Lewy Body Dementia may experience more hallucinations and problems with their movement than people living with Alzheimer’s disease too. 

3. Diagnosis can be difficult

According to The Alzheimer’s Society, Dementia with Lewy bodies is often misdiagnosed as another form of dementia. However an accurate diagnosis is really important, as the drugs used to treat hallucinations and delusions in other types of dementia can cause a bad reaction in a person with DLB.

As with Alzheimer’s disease, the only truly definitive way to diagnose Dementia with Lewy Bodies is by postmortem biopsy, but a probable diagnosis can be made by considering the symptoms, interviewing family members and conducting tests such as MRI, CT scans and performing blood tests to help rule out other causes.

How well a person copes with Lewy Body dementia can vary a lot from day to day. This presents additional issues when trying to gain a diagnosis. A lot of tests that focus on ability, for example how stiffly a person moves, or how well they process information can sometimes miss symptoms depending on whether a person is having a ‘good day’ or a ‘bad day’. 

4. Medications can be affected by the disease

As briefly mentioned above, Some drugs, particularly anti-psychotics that are frequently prescribed for patients with Parkinson’s and Alzheimer’s, can have negative effects on people living with DLB.

A neurological condition known as Neuroleptic Malignant Syndrome can develop, causing the patient to develop muscular rigidity, variable blood pressure, high fever and severe sweating. Trying to avoid this potential additional problem is one of the reasons why it is important to diagnose DLB as soon as possible.

5. There are similarities with Parkinson’s disease

Many of the neuromuscular symptoms of Parkinson’s disease are also exhibited by people with Lewy Body Dementia. People who experience problems with their movement first may be misdiagnosed with Parkinson’s.

6. Sleep can be affected

People with different types of dementia can experience sleep issues, but people with Dementia with Lewy Bodies often experience sleep problems, in fact it’s estimated to impact around 90% of people.

Sleep related symptoms can often present months or years before diagnosis, and can include things like difficulty falling asleep, difficulty staying asleep, restlessness during the night, being woken by dreams, needing to go to the toilet, feeling excessively sleepy in the daytime.

If the person has care at home, their carer may observe that they sit up, kick out, flail their arms around or grab at things during sleep. Restful sleeping time is lost, and the person can be at risk of sustaining an injury during sleep.

7. It’s unpredictable

With some types of dementia, such as Alzheimer’s disease, the symptoms are reasonably predictable, and a person’s abilities decline steadily over time, but people with DLB can exhibit erratic symptoms. People receiving elderly care or dementia care may become aggressive suddenly towards their carers which can be a traumatic experience that requires expert handling.

With one-to-one live-in care, it may be possible to isolate a particular cause for the worsening of symptoms, such as a change in medication or the development of an infection, and the symptoms may improve once the problem is remedied. However, quite often there is no obvious cause, and it seems that the unpredictability is simply due to the variable nature of the condition.

8. There is no cure

At present, there is no cure for Dementia with Lewy Bodies, and no way of preventing it from progressing. However, certain symptoms of the disease can be helped by medication, making the condition easier to manage. Cholinesterase inhibitors may be used to improve cognitive issues.

These promote brain cell function by affecting the neurotransmitter, acetylcholine. People with sleep problems caused by REM Sleep Behaviour Disorder are sometimes prescribed drugs such as clonazepam or melatonin, to help them to sleep more soundly. If the movement disorders of Parkinsonism are severe, these can be improved with levodopa.

People with Lewy Body Dementia can also benefit from occupational therapy, speech therapy and physiotherapy, depending on how their symptoms affect them. These interventions can help them to function better from day to day and to manage their condition more effectively.

Lewy Body Dementia is a degenerative brain disease that shares symptoms with other conditions, such as Alzheimer’s and Parkinson’s disease. These can include problems with thinking, understanding and memory, as well as confusion, hallucinations, poor sleep and difficulties in movement including tremors, slow movement and stiffness.


Shining a Light on Lewy Body Dementia – An Interview with Ashley Bayston of The Lewy Body Society

Founder of the Lewy Body Society, Ashley Bayston is on a mission to raise the profile of this type of dementia, which accounts for around 20 percent of all diagnoses of dementia in older people. We talked to her about the importance of raising awareness of Lewy body dementia and making it as much of a recognised name as Alzheimer’s.

Learn more about dementia care

Take a look at more Elder guides on living with and caring for dementia. 

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