Dementia with Lewy bodies
What is dementia with Lewy bodies?
Dementia with Lewy bodies (DLB) is a progressive neurological disorder caused by the abnormal buildup of proteins called Lewy bodies in the brain. It affects your cognitive abilities, movement, mood, and behavior. It is one of the most common types of dementia after Alzheimer’s disease and vascular dementia.
You will sometimes see this condition referred to as Lewy body dementia (LBD).
Causes and risk factors
The exact cause of dementia with Lewy bodies is not known, but a combination of genetic, environmental, and age-related factors play a role. Like any dementia, people over the age of 60 are at higher risk.
Dementia with Lewy bodies is generally not considered a hereditary condition, with most cases of DLB being sporadic, meaning they occur randomly with no clear familial link.
Symptoms of dementia with Lewy bodies
The first signs of dementia with Lewy bodies can vary, but generally include a combination of cognitive, physical, and psychiatric symptoms. Unlike other forms of dementia, DLB tends to present with more varied symptoms early on, many of which overlap with Parkinson’s disease.
A unique feature of DLB is the fluctuating nature of symptoms, especially in the early and middle stages. If you have DLB you may have periods of relative lucidity followed by episodes of confusion or cognitive decline. This can make it seem like the disease is progressing quickly on some days and more slowly on others.
Some of the common symptoms include:
- Fluctuating cognition: Attention, alertness and memory
- Visual hallucinations: Seeing things that aren’t there
- Motor symptoms: Tremors, slow movement, stiffness
- REM sleep behavior disorder: Acting out dreams
- Mood changes: Usually manifesting as depression, anxiety or irritability
- Autonomic dysfunction: Dizziness, digestive problems and irregular heart rate and blood pressure
Dementia with Lewy bodies differs from Alzheimer’s disease and other forms of dementia where memory loss is the primary early symptom. DLB often starts with attention issues and hallucinations.
It also differs from Parkinson’s disease where motor symptoms usually occur first. With DLB, cognitive symptoms and hallucinations may develop at the same time or before motor symptoms.
Diagnosing dementia with Lewy bodies
Early medical consultation can help with timely diagnosis and treatment, however there is no single test that can definitively diagnose DLB, so doctors rely on a combination of medical history, clinical evaluation, neurological exams, and specialised tests to make a diagnosis.
Since the early signs of dementia with Lewy bodies can overlap with other conditions like Alzheimer’s disease or Parkinson’s disease, diagnosis can be difficult.
Unlike other forms of dementia, brain imaging tests such as an MRI or CT scan cannot definitively diagnose dementia with Lewy bodies, however they can help rule out other forms of dementia and provide supportive evidence. Blood tests can also rule out other causes of cognitive decline, such as thyroid problems, vitamin deficiencies, or infections. While these tests do not confirm DLB, they help exclude other conditions that might mimic its symptoms.
Research is ongoing into biomarkers that could one day help in earlier or more accurate diagnosis. At present, diagnosis is primarily based on the presence of core symptoms and the exclusion of other conditions.
An early diagnosis of DLB can greatly help with managing symptoms and maintaining quality of life.
Living with dementia with Lewy bodies
There are many ways you can live well after a diagnosis of dementia with Lewy bodies.
With the right help and support, and by putting in place a routine that works for you, you can maintain your independence, stay connected and enjoy a good quality of life.
Here are some suggestions to help you live well after your diagnosis:
- Regularly engage in both cognitive and physical exercise
- Attend support groups, activities and clubs like the ones organised by Alzheimer Scotland
- Tell family and friends about your diagnosis, they may be able to offer you help and support
- Make sure you are attending any medical appointments – with your GP or any other medical professionals
- Find out what resources are available to you in your community
Treatment for dementia with Lewy bodies
Currently, there’s no cure for dementia with Lewy bodies, so treatment focuses on managing symptoms and improving quality of life. Since DLB affects both cognitive and motor functions, a combination of medications, therapies, and lifestyle adjustments is often necessary. Treatment approaches should be person-centred and may change as the disease progresses.
Medications for cognitive symptoms, motor symptoms, and mood can help manage the progression of DLB and improve quality of life. These include:
- Medications (like donepezil) are used to treat cognitive symptoms, similar to its use in the treatment of Alzheimer’s disease
- Levodopa may help with motor symptoms, similar to its use in the treatment of Parkinson’s disease
- Antidepressants can help with mood and behavioral symptoms.
However, if you have DLB you will need to be monitored closely when using medication as unique or more pronounced side effects are a possibility.
Frequently asked questions
What is a Lewy body?
A Lewy body is an abnormal clump of proteins that forms inside nerve cells in the brain. Primarily composed of a protein called alpha-synuclein, they are named after Dr. Friedrich Lewy, who discovered them in 1912. These protein deposits disrupt the normal functioning of nerve cells, leading to the cognitive, motor, and psychiatric symptoms seen in diseases like Dementia with Lewy bodies (DLB).
Is dementia with Lewy bodies related to Parkinson’s?
Dementia with Lewy bodies and Parkinson’s disease are both caused by the abnormal accumulation of the protein alpha-synuclein in the brain, forming Lewy bodies that disrupt normal brain function. However, the way these diseases affect the brain and how their symptoms manifest can differ. Given their overlap, it’s not uncommon for people with Parkinson’s disease to eventually develop dementia with Lewy bodies, or for someone diagnosed with DLB to exhibit similar motor symptoms to Parkinson’s disease.
Can dementia with Lewy bodies come on suddenly?
Dementia with Lewy bodies tends to have a gradual onset but fluctuating symptoms. This means someone living with DLB can experience episodes that appear to be a sudden change in behavior or cognition. When this happens, it is essential to consult a healthcare professional to determine the underlying cause and adjust treatment as necessary as external factors like infections can cause this.
How to prevent dementia with Lewy bodies?
Preventing dementia with Lewy bodies specifically can be challenging, as the exact causes are not fully understood and are influenced by a combination of genetic, environmental, and lifestyle factors. That said, anything you can do to promote good brain health should reduce your risk of developing dementia. This includes a healthy diet, regular physical activity, social interaction and managing stress.
Our community and support
Alzheimer Scotland offers support services and therapeutic activities all across the country. Find out how we support people living with dementia and their families and carers in the local community.