7 Stages of Lewy Body Dementia

Key Takeaways

Lewy body dementia (LBD) is a progressive neurological disorder that causes worsening movement problems and mild cognitive decline.
There are seven stages of Lewy body dementia that start with no cognitive symptoms and progress to very severe cognitive decline, resulting in complete dependence on others for care.
Lewy body dementia lasts 5-8 years on average. However, the life expectancy after a diagnosis of LBD can range from 2 to 20 years.

Lewy body dementia (LBD) is one of various progressive neurological disorders in which the symptoms start slowly and get worse over time. In the early stages of Lewy body dementia, there are very mild symptoms, and most people can function normally. However, as dementia with Lewy bodies progresses, there are more severe cognitive symptoms, behavioral symptoms, and other symptoms, causing the affected person to become dependent on others for care.

Dementia affects millions of Americans. There are approximately 1 million people in the US living with Lewy body dementia (LBD). Please continue reading to learn more about the seven stages of Lewy bodies dementia.

What are Lewy bodies?

Lewy bodies are abnormal deposits of a protein called alpha-synuclein in the brain. These protein deposits, called Lewy bodies, affect the levels of neurotransmitters, which are natural chemicals in the central nervous system that control thinking, mood, behavior, and movement. The exact cause of Lewy body dementia is unclear, but research has shown that it is associated with a loss of neurons (brain cells) that make two important neurotransmitters, acetylcholine and dopamine. Low levels of these neurotransmitters result in progressive dementia.

Age is among the biggest risk factors for Lewy body dementia (this condition typically affects people above the age of 50). Other risk factors include Parkinson’s disease and REM sleep behavior disorder.

Is Lewy body dementia genetic?

Lewy body dementia is not a genetic condition. However, having a family member with LBD can increase your risk. Mutations in certain genes such as apolipoprotein E (APOE), glucosylceramidase beta (GBA), and synuclein alpha (SNCA) have been linked to an increased risk of Lewy body dementia, but the exact cause is unknown.

How is Lewy body dementia different from Alzheimer’s disease and Parkinson’s disease dementia?

Dementia with Lewy bodies and Alzheimer’s disease are different types of dementia. It can be challenging to differentiate between these two and other brain diseases, especially in the early stages. However, memory problems are usually more prominent in early Alzheimer’s disease. On the other hand, people with Lewy body dementia are more likely to have movement problems, hallucinations, REM sleep disorder, and autonomic dysfunction (urinary incontinence, low blood pressure, dizziness, and an increased fall risk).

Similarly, an overlap in symptoms can make a diagnosis of Lewy body dementia versus Parkinson’s dementia challenging. But Parkinson’s symptoms tend to be movement symptoms (tremors, slow movement, rigidity), whereas symptoms of early Lewy body dementia are more likely to be mild cognitive decline and behavioral symptoms.

How is Lewy body dementia diagnosed?

A confirmed diagnosis of dementia with Lewy bodies can be made with tests such as a single-photon emission computerized tomography (SPECT) scan, a positron emission tomography (PET) scan, 123-iodine-MIBG myocardial scintigraphy, and a sleep study to confirm REM sleep behavior disorder.

What are the 7 stages of Lewy body dementia?

The seven stages of Lewy body dementia are as follows:

Stage 1: No cognitive symptoms

People with stage 1 (early stage) Lewy body dementia have normal functioning and no detectable LBD symptoms. Signs of dementia may show up in imaging studies, however.

Stage 2: Very mild cognitive symptoms

People with stage 2 Lewy body disease have normal function and very subtle cognitive symptoms, such as mild forgetfulness. Family members do not usually notice these minor symptoms. If the symptoms are noticeable, they are usually put down to age-related forgetfulness.

Stage 3: Mild cognitive symptoms

People with stage 3 Lewy body dementia experience mild cognitive decline, including mild memory loss, trouble remembering recent events, difficulty concentrating, confusion, and challenges at work or in social settings. These symptoms may be noticed by family members.

Stage 4: Moderate cognitive decline

In the majority of people, Lewy body dementia is diagnosed in stage 4. At this stage of the disease, physicians can identify cognitive decline on a neurological exam. Common symptoms such as forgetfulness, trouble locating familiar objects, problem-solving difficulties, sleep disorders, and fluctuating cognition can make day-to-day functioning difficult. It can be challenging for people with stage 4 Lewy body dementia to manage their finances or find their way around unfamiliar locations, increasing the risk of wandering off or getting lost.

Stage 5: Moderate to severe cognitive decline

In stage 5 Lewy body dementia, the person’s symptoms may include significant memory loss, confusion, and difficulties with movement and coordination, which can interfere with routine functioning. Affected individuals may experience hallucinations, delusions, and paranoia and display inappropriate or unpredictable behavior. People with stage 5 dementia typically have decreased independence and may need assistance with activities of daily living such as bathing and meal preparation.

Stage 6: Severe cognitive decline

As the disease progresses to stage 6, people with late-stage dementia have significant memory loss and cognitive decline, requiring a high level of assistance in daily life. Many people in this stage of dementia have short-term memory loss and can only recall memories from early life. Other symptoms can include personality changes, loss of the ability to speak, and loss of bladder control.

Stage 7: Very severe cognitive decline

People with stage 7 LBD have very severe cognitive decline, communication difficulties, and movement disorders, requiring round-the-clock assistance and support to remain comfortable.

Frequently Asked Questions

What is stage 7 of Lewy body dementia?

Stage 7 is the final stage of Lewy body dementia. It is associated with very severe cognitive decline and complete dependence on others for care.

What happens in the final stages of Lewy body dementia?

People in the final stages of Lewy body dementia usually have severe problems with memory and cognitive function. They need help with most daily tasks, including personal hygiene. Movement symptoms can increase the risk of falls and injuries. Auditory and visual hallucinations, delusions, and paranoia can cause distress to the person with Lewy body dementia and their family members. In addition, behavioral symptoms such as agitation and aggression can make it difficult to manage a person living with LBD.

How long is Stage 7 Lewy body dementia?

The course of the disease is different in each person with Lewy body dementia. Average timeframes for the seven stages of Lewy body dementia are as follows:

Stage 1: Unknown (could be 10-15 years)
Stage 2: Unknown
Stage 3: 2-7 years
Stage 4: 2 years
Stage 5: 1.5 years
Stage 6: 2-2.5 years
Stage 7: 1.5-2.5 years

What is the life expectancy for someone with Lewy body dementia?

Lewy body dementia is a progressive disease that lasts 5-8 years on average. However, the life expectancy after a diagnosis of LBD can range from 2 to 20 years. The rate of progression of the disease varies from person to person, depending on their age, underlying health status, and the severity of LBD symptoms. In addition to cognitive impairment, many people with dementia have a loss of appetite, weight loss, and social isolation, resulting in a failure to thrive. Oftentimes, people with Lewy body dementia are affected by other life-threatening illnesses. Pneumonia is a leading cause of death and is responsible for up to 2 out of 3 deaths in people with dementia.

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