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What do you expect in each stage of Lewy Body Dementia? Caregivers, loved ones, and even patients themselves need straightforward answers.
This quick overview of 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, leading 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.
Recognizing Its Symptoms
Lewy body dementia (LBD) is a progressive neurological disorder that usually starts slowly 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 to 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 affect your thinking and physical abilities. Knowing these will help you and your caregiver identify what’s happening and what to do next.
Here, we will discuss all seven phases, from small changes in cognition to full-on meltdown mode, along with survival tips.
Phase 1: Early Cognitive Changes
In the early stage, small shifts in your personality that change the way you think will first appear. This is most commonly noticed by very mild symptoms of memory loss and family members picking up on alterations in your cognitive functions.
Along with changes and 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 of 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 organizing thoughts, making decisions, and solving problems. This struggle is due to diminished speed of processing information, mild memory loss, and problems with fluctuating levels of attentiveness. All this together makes it difficult for them to perform normal activities.
Stage 3: Moderate Cognitive Decline
In stage six of LBD, there’s a 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 memory lapses and suffer from great loss of memory, affecting 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.
Stage 5: Severe Motor Symptoms
Severe motor symptoms characterize the fifth stage of LBD. 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.
Due to advanced motor problems during this phase, increased fall risk and accidents occur. Additional safety measures and care are needed. At this stage, speech can become 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.
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 on 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 essential to managing LBD. They offer emotional guidance, 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, and 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, individualized care must be provided, considering the specific needs and symptoms experienced by each patient with LBD.
Coping Strategies for Caregivers
- 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.
- Educate oneself about dementia.
- Have realistic expectations of the disease and one’s capabilities
- Share knowledge with others involved in caregiving
- Use the “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 help develop coping mechanisms necessary to maintain the caregiver’s well-being and provide proper care for the patient.
Summary
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.
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 monitor any changes and seek medical guidance as needed closely.
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 of 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, plaques and tangles affect memory and cognitive function in Alzheimer’s disease.
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: 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.
Sources
- Fujishiro, Hiroshige, and Kenji Kosaka. “When does cerebral β‐amyloid deposition begin in Lewy body dementia?.” Neurology and Clinical Neuroscience 8.6 (2020): 362-371.
↩︎ - Miller, R. L., Dhavale, D. D., O’Shea, J. Y., Andruska, K. M., Liu, J., Franklin, E. E., … & Kotzbauer, P. T. (2022). Quantifying regional α‐synuclein, amyloid β, and tau accumulation in lewy body dementia. Annals of Clinical and Translational Neurology, 9(2), 106-121. ↩︎
- Scheltens, Philip, et al. “Alzheimer’s disease.” The Lancet 397.10284 (2021): 1577-1590.
↩︎ - Milán-Tomás, Ángela, Marta Fernández-Matarrubia, and María Cruz Rodríguez-Oroz. “Lewy body dementias: a coin with two sides?.” Behavioral Sciences 11.7 (2021): 94.
↩︎ - Armstrong, Melissa J. “Advances in dementia with Lewy bodies.” Therapeutic Advances in Neurological Disorders 14 (2021): 17562864211057666. ↩︎
- Prasad, Sakshi, et al. “Recent advances in Lewy body dementia: A comprehensive review.” Disease-a-Month 69.5 (2023): 101441. ↩︎
- Cotta Ramusino, M., Perini, G., Vaghi, G., Dal Fabbro, B., Capelli, M., Picascia, M., Franciotta, D., Farina, L., Ballante, E. and Costa, A., 2021. Correlation of frontal atrophy and CSF tau levels with neuropsychiatric symptoms in patients with cognitive impairment: a memory clinic experience. Frontiers in Aging Neuroscience, 13, p.595758.
↩︎ - Orayj, Khalid. Pharmacotherapeutic interventions in Parkinson’s disease: investigating prescribing factors and health outcomes. Diss. Cardiff University, 2020. ↩︎
- 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 Research, 19(2), 133-145. ↩︎
- 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. ↩︎
Last Updated on by Sathi Chakraborty, MSc Biology
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