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The 7 Stages of Lewy Body Dementia: A Comprehensive Overview

What do you expect in each stage of Lewy Body Dementia? Caregivers, loved ones, and even patients themselves need straightforward answers. This quick overview on the 7 stages of Lewy Body Dementia delivers precisely that. Get a no frills breakdown on what to expect, how to respond, and what to prepare for as the disease progresses and the condition develops.

Key Tips

  • LBD is a type of dementia with a unique set of symptoms. It starts with abnormal protein deposits in the brain which lead to more severe cognitive decline individuals have1.
  • Within LBD there are seven stages to it2. The earliest stage presents mild cognitive changes and by the last stage it’s a very severe cognitive decline and motor decline.
  • Combining both medication and other methods is key to providing support for LBD. But caregivers should also have their own unique coping mechanisms in place as well.

Understanding Lewy Body Dementia

Often mistaken for Alzheimer’s disease3, Lewy body dementia (LBD) is its own form of dementia that comes from irregular protein deposits within the brain called Lewy bodies. These proteins cause an overall loss in both brain function and mental abilities that starts mild but eventually becomes severe dementia if left untreated. Causing problems with basic thinking as well as motor skills.

As common as it may be – accounting for about 3.2% of all new cases within dementia4 – separating it from other types is crucial due to its unique symptoms. For example visual hallucinations or Parkinson-like movement issues are only seen within LBD thanks to these protein deposits.

nerve cells
Image by Gerd Altmann from Pixabay

Recognizing Its Symptoms

Lewy body dementia (LBD) is progressive neurological disorder that usually starts slow with a decline in cognition before progressing into areas such as attention, planning, multitasking and other daily tasks done behind your mind. Not getting checked out when first noticed can cause serious damage on your day-to-day life.

It doesn’t stop there either because LBD also causes motor symptoms such as muscle stiffness, slowed movements and issues with walking. There’s also a possibility of tremors that’ll make physical functioning harder5.

People with LBD might even come around to developing psychiatric symptoms like depression and apathy6.

How It Progresses

The early stages of Lewy Body Dementia go through seven phases in total. While each phase has different symptoms they all affect both your thinking and physical abilities. Knowing what these are will help you and your caregiver identify what’s currently happening and what to do next.

From small changes in cognition to full on meltdown mode, all seven phases will be gone over here along with tips for survival.

Phase 1: Early Cognitive Changes

The early stage is when small shifts in your personality changes the way you think will first appear. Most commonly it’ll be noticed by very mild symptoms of memory loss as well as family members picking up on alterations in your cognitive functions.

Along with changes significant memory loss in thinking abilities, there may also be a gradual worsening of other symptoms. Some examples of common forms of these are visual hallucinations and mood swings. Mood swings might come as apathy, reduced motivation or changes in emotional state along with some difficulty remembering things.

This early phase is typically characterized by mild cognitive decline that can affect daily functioning to a certain extent. Along with the physical symptoms mentioned above, those affected may have minor problems with their thinking abilities during this stage early life.

Stage 2: Mild Cognitive Impairment

The second stage of LBD progression is characterized by:

  • Mild cognitive impairment
  • Significant memory decline that hinders one’s ability to complete many daily life tasks
  • Fluctuations in cognition, attention, and alertness become more pronounced
  • Visual hallucinations may also occur.

Planning and problem-solving also become significantly harder for individuals during this time. There might be difficulties in organizing thoughts, making decisions and solving problems. This struggle is due to diminished speed of processing information along mild memory loss and problems with fluctuating levels of attentiveness. All this together makes it difficult for them to perform normal activities.

Image by Gerd Altmann from Pixabay

Stage 3: Moderate Cognitive Decline

In stage six of LBD, there’s high risk of a severe manifestation of psychiatric and behavioral symptoms. These can include depression vascular dementia, aggression, agitation, complex visual hallucinations and mood swings. In this phase the patient reaches the point where they require care from professionals such as old age psychiatrists or neurologists.

Due to the intensity of these symptoms in this phase, individuals typically need to seek support and specific treatment options like respite care provided by trained caregivers for temporary relief from their loved ones’ responsibilities. To that consultation with specialists is necessary along with comprehensive palliative care arranged through collaboration between primary physicians and experts in various fields related to managing LBD.

Stage 4: Extreme Loss of Mental Capabilities

The fourth stage of LBD is characterized by extreme loss of mental abilities. At this point, individuals tend to have frequent lapses in memory and suffer from great loss of memory which affects their ability to function effectively. In addition, they might struggle with managing finances and getting around.

To problems with memory, patients in the fourth stage may at times fail to recognize loved ones because they are unable any longer to remember them. As a result, these individuals become completely dependent on caregivers for their basic needs and safety as their cognitive decline continues to get worse. More information is also provided below.

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Stage 5: Severe Motor Symptoms

The fifth stage of LBD is characterized by severe motor symptoms. This involves severe muscle stiffness and a reduction in one’s ability to perceive touch which greatly limits one’s mobility. These motor problems resemble those seen in Parkinson’s disease such as stiff muscles, slow movement, difficulty walking and noticeable trembling.

Increased fall risk and accidents occur due to advanced motor problems during this phase. Additional safety measures and care are needed. Most times at this stage speech becomes difficult since it can be very challenging often spoken softly or even lost completely hence most daily activities require assistance.

Stage 6: Acute Mental Illness and Behavioral Disturbances

In the sixth stage of LBD, patients experience severe psychiatric and behavioral symptoms7. Such symptoms include complex visual hallucinations, depression, mood swings, aggression and agitation among others. Old age psychiatrists or neurologists often provide care for these patients who are already at an advanced stage.

Because these indications are highly pronounced during this period, people usually need specific treatments such as respite care provided by trained caregivers offering short-term relief from responsibilities that might involve conversations with professionals about palliative care services for individuals living with LBD as well as primary providers working in collaboration with various experts dealing with the management of LBD.

Image by Udo Voigt from Pixabay

Stage 7: End-Stage LBD

The last and ultimate phase of LBD is known as the end-stage. This stage can present with a rapid decline in cognitive function, noticeable changes in communication such as reduced speech fluency, prolonged pauses while speaking, and requiring slower and calmer interactions.

In this final stage of fatal disease, patients typically need constant care to meet their basic needs. A structured routine that includes simple tasks, consistent schedules, and regular physical activity may help manage symptoms. Medical treatment for end-stage LBD usually involves using Parkinson’s disease medications to address movement difficulties,cholinesterase inhibitors for cognitive impairment, and other necessary therapies aimed at managing various symptoms.

Seeking Help and Support

It is crucial to seek assistance early diagnosis and encouragement when facing Lewy Body Dementia (LBD). Healthcare professionals, such as neurologists or geriatric medicine specialists, can provide valuable advice confirmed diagnosis and treatment options. Organizations like the Lewy Body Dementia Association offer support and resources for both individuals with LBD and their families.

Support groups are also an essential aspect of managing LBD. They not only offer emotional guidance but also practical suggestions and a sense of community for those affected by the disease. LBDA in conjunction with the Lewy Body Resource Center helps locate specialized care facilities that provide various services including respite, memory care, adult day centers, movement disorder therapy as well as treatment for associated conditions.

Treatment and Management Options

Treatment options for LBD vary from medications to non-drug interventions. Quetiapine or clozapine can be used to manage behavioral issues, while Sinemet® (Levodopa/Carbidopa) is effective in controlling motor symptoms8. Cholinesterase inhibitors like rivastigmine and donepezil have also been found to effectively address cognitive and behavioral problems9.

Aside from medication, other forms of treatment are important in managing LBD as well. These include occupational therapy, physical therapy, speech and language therapy, environmental adjustments, and sensory therapies such as lighting modifications,different visual stimulations, breathing exercises, massage music/baths, which may all prove beneficial.

Physical therapy specifically focuses on balance training through specialized exercises, in order to reduce the chances of falls. It has potential benefits by enhancing results both cognitively & functionally.However, it’s crucial that individualized care is provided, taking into consideration the specific needs and symptoms experienced by each patient with LBD.

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Coping Strategies for Caregivers

  1. Caring for a patient with LBD can be emotionally and physically taxing for caregivers. To help manage this burden, there are stress management techniques that can provide support.
  2. Educate oneself about dementia
  3. Have realistic expectations of the disease and one’s capabilities
  4. Share knowledge with others involved in caregiving
  5. Use “validate, join, and distract” method to handle difficult behaviors.

These strategies offer valuable guidance in navigating through caregiver challenges. It is beneficial for caregivers to remain composed by practicing patience and empathy towards their loved ones while creating a calm environment following routine patterns. Seeking assistance from resources such as support groups or educational materials on LBD can also aid in developing coping mechanisms necessary to maintain both the caregiver’s well-being along with providing proper care for the patient.


Understanding LBD is a journey that requires patience, understanding, and resilience. From early cognitive changes to the end-stage, each stage of LBD presents its unique challenges. Recognizing the symptoms and understanding the progression of the disease can greatly help in managing the condition effectively.

While LBD is a complex and challenging disorder, it’s crucial to remember that help and support are available. Healthcare professionals, support groups, and specialized care facilities can provide valuable guidance and care. For caregivers, self-care, stress management, and employing coping strategies are essential in navigating the challenges of caregiving. We hope that this comprehensive guide provides a clearer understanding of LBD and serves as a valuable resource.

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Frequently Asked Questions

Is Lewy body the worst dementia?

Lewy body dementia can have a devastating impact on individuals as it interferes with cognition, mobility, actions and emotions due to the presence of abnormal protein deposits in the brain. This condition combines features from both Alzheimer’s disease and Parkinson’s disease10, making it particularly severe symptoms challenging for those affected by it.

Can Lewy body dementia get worse suddenly?

The sudden deterioration of symptoms in Lewy body dementia can occur unpredictably, making it essential to closely monitor any changes and seek medical guidance as needed.

What causes death with Lewy body dementia?

In later phases of lewy body dementia, muscle weakness can impact the ability to swallow properly. This may result in aspiration of food or liquid and increase the risk for developing pneumonia, a common cause of death among individuals with this disease. Even without swallowing difficulties, patients who are bedridden for extended periods may be susceptible to pneumonia or heart failure as well.

What is the difference between Lewy Body Dementia and Alzheimer’s disease?

The primary difference between Lewy Body Dementia and Alzheimer’s disease is that in the former, there are abnormal protein deposits present in brain cells along with visual hallucinations mixed dementia. On the other hand, in Alzheimer’s disease, plaques and tangles affect memory and cognitive function.

What sets these two conditions apart is their underlying pathology and symptoms. In cases of Lewy Body Dementia, abnormalities such as protein deposits contribute to visual hallucinations while Alzheimer’s disease mainly affects memory and cognitive abilities through the formation of plaques.

What are the seven stages of Lewy Body Dementia?

The development of Lewy Body Dementia can be categorized into seven stages, namely Early Cognitive Changes, Mild Cognitive Impairment, Moderate and Severe Cognitive Decline, Advanced Motor Symptoms, Intense Psychiatric and Behavioral Symptoms, and End-Stage LBD.

These distinct phases represent the gradual deterioration from initial indications to more advanced manifestations of this condition.


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  3. Scheltens, Philip, et al. “Alzheimer’s disease.” The Lancet 397.10284 (2021): 1577-1590.
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  8. Orayj, Khalid. Pharmacotherapeutic interventions in Parkinson’s disease: investigating prescribing factors and health outcomes. Diss. Cardiff University, 2020. ↩︎
  9. Shi, X., Ren, G., Cui, Y., & Xu, Z. (2022). Comparative efficacy and acceptability of cholinesterase inhibitors and memantine based on dosage in patients with vascular cognitive impairment: a network meta-analysis. Current Alzheimer Research19(2), 133-145. ↩︎
  10. Rigby, Taylor, et al. “Comparison of the caregiving experience of grief, burden, and quality of life in dementia with Lewy bodies, Alzheimer’s disease, and Parkinson’s disease dementia.” Journal of Alzheimer’s Disease 80.1 (2021): 421-432. ↩︎


Saket Kumar

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