Dementia is not one condition – it’s an umbrella term for hundreds of conditions that can affect a person’s cognitive abilities, such as memory and thinking.

While the most common kind of dementia is Alzheimer’s disease – which many people know of – the second most common dementia is Lewy body dementia.

Despite being relatively common when compared to other dementias, Lewy body dementia is still frequently unrecognised.

One of the most challenging aspects of Lewy body dementia is that it can only be identified by examining brain tissue after death, so there is no way of testing their presence to confirm a definitive diagnosis.

Because Lewy body can be difficult to diagnose, it can take years before a diagnosis is made.

In fact, for a third of people with the disease, getting the correct diagnosis took more than two years.

What is Lewy Body Dementia?

Lewy bodies are abnormal clumps of protein, specifically alpha-synuclein. If these clumps develop in the main part of the brain, the cortex, then it can result in dementia.

People with Parkinson’s disease also have Lewy bodies in their brains, but the structure is different from Lewy bodies that are found in individuals with dementia.

Lewy body dementia is a type of progressive dementia, which means symptoms increase over time. In fact, Lewy body dementia symptoms typically increase more rapidly than Alzheimer’s disease.

The difference between Lewy body dementia and Parkinson’s is the progression of their conditions.

A person with Lewy body dementia develops memory and thinking problems before or at the same time as when they develop movement problems.

While a person with Parkinson’s may have movement problems for years before they develop cognitive decline.

All having similar symptoms to other neurodegenerative conditions, Alzheimer’s disease and Parkinson’s disease, Dementia with Lewy bodies can be challenging to diagnose.

The Diagnosis of Lewy Body Dementia

There is a lack of awareness of Lewy body dementia among health professionals as well as families. And this may be the reason why a diagnosis is missed.

A delay in diagnosis is common with Lewy body dementia; one research found that 78% of cases were given alternative first diagnoses. With the most common Parkinson’s disease (39%), Alzheimer’s disease or other cognitive impairment (36%) and mental illness (32%).

Caregivers of people with Lewy body dementia reported overall to be frustrated by their experiences with physicians.

The reason being initial symptoms of Lewy body dementia can be very minimal, but then eventually progress to affect a person on a daily basis. There is also no single test that can diagnose Dementia with Lewy Bodies.

Instead, a diagnosis is made by taking a detailed history of the pattern of symptoms, and by excluding other possible causes such as Vascular dementia and Alzheimer’s disease.

Some common symptoms include;

  • Difficulties with understanding, thinking, memory and judgement.
  • Fainting spells and periods of unsteadiness.
  • Tremors and difficulties controlling their muscles.
  • Periods of confusion
  • Hallucinations – either visual or auditory
  • Disrupted sleep or changes in a person’s sleep patterns
  • Intense dreams or nightmares.

Current Research into Lewy Body Dementia

There is no cure for Dementia with Lewy bodies, but one of the main focus of research is improving the diagnosis of Lewy body dementia. In particular for health professionals.

Earlier this year, a new criteria for the diagnosis of dementia with Lewy bodies was created to help improve accuracy.

Despite there being no cure, there are a number of treatment options available to help manage symptoms – such as challenges with thinking, walking and even hallucinations.

The latest research looks to learn more about protein clumps – the Lewy bodies. Recent vaccine studies found that there may be a way to create antibodies against alpha-synuclein.

Though not a cure, it could lead to the prevention of Lewy body dementia.

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