Lewy body dementia (LBD) is a progressive brain disorder that affects thinking, movement, behavior, and mood. It is one of the most common causes of dementia after Alzheimer’s.
LBD is associated with abnormal deposits of a protein called alpha-synuclein in the brain.
These deposits, called Lewy bodies, affect chemicals in the brain whose changes, in turn, can lead to problems with thinking, movement, behavior, and mood.
LBD shares some common symptoms with Alzheimer’s and Parkinson’s diseases. But it also has unique differences that can make early and accurate diagnosis challenging.
Recognizing the stages of LBD can help patients, families, and healthcare providers plan appropriate strategies for care and improve quality of life.
The Stages of Lewy Body Dementia
Experts have identified seven stages of LBD progression. The stages are based on the degree of cognitive and functional impairment.
Progression through the stages varies from person to person and is influenced by many factors. On average, LBD progresses more rapidly than Alzheimer’s but more slowly than other types of dementia
Stage 1 - No Cognitive Decline
In this stage, a person has no apparent signs or symptoms of cognitive decline. They function normally in daily life.
This stage can last for years before any changes are noticeable.
Stage 2 - Very Mild Cognitive Decline
Subtle symptoms like mild forgetfulness or difficulty concentrating may appear. A person may lose things more often or need help multitasking. But symptoms are barely noticeable to others.
Stage 3 - Mild Cognitive Decline
Memory and thinking problems become more evident to others. People may need help driving in familiar places, forget important dates or events, or need help following recipes.
Planning, problem-solving, and completing tasks also become more burdensome.
Stage 4 - Moderate Cognitive Decline
Cognitive difficulties interfere with daily living. Significant memory loss occurs, including forgetting personal history details and people’s names.
Following conversations, finding words, or performing sequential tasks is challenging. A person needs more cues and reminders.
Stage 5 - Moderately Severe Cognitive Decline
Central assistance with daily living is required in this stage. Memory loss is severe, with the person possibly forgetting their address, phone number, school attended, or occupation.
They may need to find out the time or date or where they are. Changes in personality and behavior may occur.
Stage 6 - Severe Cognitive Decline
Daily activities require extensive assistance. The person may need more memory of personal history or the ability to recognize relatives or familiar faces.
Speech ability declines, leading to limited vocabulary. Mobility also decreases, increasing the risk of falls. Anxiety, agitation, and hallucinations often emerge.
Stage 7: Very Severe Cognitive Decline
This final stage is marked by a nearly vegetative state requiring full-time nursing care. The person is often bedridden, incontinent, and incapable of communicating.
Swallowing is impaired with a high risk of aspiration. Significant personality changes may have occurred. Median duration is 1.5 to 2.5 years.
What Is the Life Expectancy with Lewy Body Dementia?
On average, LBD shortens life expectancy to 5 to 8 years after diagnosis. However, some patients live with LBD for up to 20 years, while others succumb more rapidly.
Several factors influence survival time:
- Age at diagnosis – Younger people may live longer with LBD.
- Stage at diagnosis – Earlier stage diagnosis can increase longevity.
- Overall health status – Better health often correlates to longer survival.
- Presence of other diseases – Co-existing illnesses like heart disease may decrease life expectancy.
- Access to quality care – Comprehensive treatment can prolong survival.
Consulting with medical experts provides a more accurate prognosis based on individual circumstances. However, early intervention maximizes longevity and quality of life.
Recognizing the Symptoms of Lewy Body Dementia
LBD affects individuals differently. But several core symptoms help distinguish it from similar disorders:
Cognitive Changes
- Impaired memory, attention, planning, reasoning
- Confusion, disorientation
- Visuospatial difficulties
Visual Hallucinations
- Seeing objects, people, and animals that are not there
- Distorted perceptions of shapes, colors, movements
Movement Symptoms
- Muscle rigidity, tremors, slowness of movement
- Impaired coordination, frequent falls
- Shuffling gait, reduced facial expressions
Fluctuating Cognition
- Alertness shifts from lucid to confused
- Periods of staring into space or drowsiness
- Changes in concentration and attention
Sleep Disorders
- REM sleep behavior disorder – acting out vivid dreams
- Insomnia, daytime drowsiness, restless leg syndrome
Behavioral and Mood Changes
- Depression, anxiety, apathy, irritability
- Agitation, aggression, personality changes
- Delusions or paranoia
Autonomic Dysfunction
- Orthostatic hypotension – drop in blood pressure upon standing
- Urinary incontinence
- Constipation
- Sweating abnormalities, sensitivity to temperature changes
Understanding Changes in Behavior with Lewy Body Dementia
In addition to cognitive decline, LBD involves significant behavioral and mood changes that worsen over time. Being aware of these can help in managing symptoms. Common changes include:
- Visual hallucinations – Seeing objects, people, or animals that are not present. Hallucinations often involve vivid scenes that feel real to the person.
- Delusions – These are firmly held false beliefs not based on reality, such as a belief that someone is plotting against them. Delusions arise from misunderstandings of actual events.
- Fluctuating cognition – Alertness and cognitive ability vary unpredictably throughout the day. Periods of confusion come and go.
- Agitation and aggression – Restlessness, impatience, irritability, and emotional outbursts. The person may act in a threatening way.
- Apathy and social withdrawal – Loss of motivation, initiative, and interest in usual activities or interactions.
- Anxiety and depression – Increased worrying, nervousness, sadness, crying spells, feelings of worthlessness or hopelessness.
- Sleep disturbances – Acting out dreams, waking frequently at night, excessive daytime sleepiness. It disrupted sleep cycles.
Caregivers should be prepared for these behavioral changes and seek medical advice on handling them safely and compassionately. Non-drug approaches are usually tried first before medications.
Available Treatment Options for Lewy Body Dementia
Currently, no cure exists for LBD, but various treatments can improve symptoms and quality of life. A comprehensive management plan involves:
Medications
Several types of medications may provide benefits:
- Cholinesterase inhibitors – Increase acetylcholine levels, improving memory, thinking, and daily function. These include donepezil (Aricept), rivastigmine (Exelon), and galantamine (Razadyne).
- Antipsychotic drugs – Treat psychosis, agitation, and aggression. They are used cautiously due to increased sensitivity in LBD.
- Antidepressants – Treat depression and anxiety. Selective serotonin reuptake inhibitors (SSRIs) may help.
- Sleep aids – Improve sleep disorders like REM sleep behavior disorder and daytime drowsiness.
- Parkinson’s medications – Levodopa, dopamine agonists, and MAO-B inhibitors can alleviate movement symptoms.
Non-Drug Therapies
Other supportive therapies include:
- Cognitive training – Exercises to maintain thinking and memory capacity. Puzzles, games, memory aids.
- Occupational therapy – Improve capacity for daily activities. Adaptive devices and home modifications.
- Physical therapy – Increase mobility, flexibility, balance, and strength. Fall prevention.
- Speech therapy – Maintain communication skills as long as possible. Alternative communication strategies.
- Counseling – For coping with the emotional impact of LBD. Guidance for behavioral management.
Lifestyle Changes
Adjusting daily habits and surroundings can enhance safety and quality of life:
- Simplifying routines and environment to limit confusion
- Providing cues and reminders to orient
- Ensuring proper nutrition and exercise
- Engaging in enjoyable hobbies and social activities
- Implementing good sleep practices
- Organizing photos or videos to reinforce memories
- Seeking support groups for caregivers and patients
- Planning advanced directives and palliative care
Multidisciplinary Medical Care
LBD patients benefit from specialized care involving:
- Neurologists – Diagnose LBD and provide ongoing medical management
- Psychiatrists – Treat psychiatric symptoms and behavioral issues
- Physical therapists – Address mobility and balance impairments
- Occupational therapists – Recommend strategies to maintain daily function
- Speech therapists – Work on communication difficulties
- Social workers – Arrange home health care and community services
- Geriatric care managers – Coordinate care services and support families
Tips for Managing Symptoms of Lewy Body Dementia
Caring for an LBD patient brings many challenges. These practical tips can help families and caregivers:
Modify the home environment – Declutter, improve lighting, install grab bars and railings, and remove tripping hazards. This promotes safety and reduces confusion.
Establish schedules and routines – Have set times for meals, medications, sleep, and activities. Consistency provides comfort.
Use calendars, clocks, and notes – Visual cues and reminders compensate for memory loss about dates, times, and tasks.
Limit noise and disruptions – Minimize external distractions and overstimulation to decrease agitation.
Reassure the person – Validate their feelings and experiences. Avoid arguing about delusions. Offer comfort through touch, music, and pets.
Encourage movement – Help the person exercise safely to maintain strength and mobility. Monitor for balance issues.
Simplify tasks – Break activities into smaller, more manageable steps. Provide ample time to complete.
Keep nights quiet – Ensure the sleeping environment is comfortable and disturbances-free. Follow good sleep hygiene practices.
Watch for new or worsening symptoms – Note any changes and discuss promptly with the medical team to maximize quality of life.
Caring for an LBD patient is demanding but rewarding. Families can enhance functioning and provide meaningful connections through education, support, and compassion.
Conclusion - Lewy Body Dementia
Lewy body dementia involves a progressive decline in mental and physical abilities that can profoundly impact patients and families.
Understanding the stages of LBD allows for earlier detection and intervention to manage symptoms.
While no cure exists, treatments and lifestyle adaptations can slow the worsening of symptoms and improve quality of life. With comprehensive care and support, people with LBD can continue engaging in meaningful activities and relationships for some time.
Key Takeaways
- Lewy body dementia (LBD) involves abnormal protein deposits called Lewy bodies that damage brain cells, causing progressive decline in thinking, movement, and behavior.
- LBD progresses through seven stages, from no symptoms to severe impairment.
- Stage 7 reflects profound loss of function and dependence on full-time care. In stage 7, communication becomes extremely difficult. The median duration is 1.5 – 2.5 years as the condition advances.
- Symptoms include cognitive impairment, visual hallucinations, movement disorders, sleep disturbances, and behavioral changes like aggression or apathy.
- Treatment focuses on managing symptoms through medications, therapy, lifestyle modifications, and multidisciplinary medical care.
- Caregivers can help by simplifying tasks, establishing routines, ensuring safety, engaging the person, and watching for new symptoms.
- For specialized dementia care and support, Applewood Our House provides assisted living and memory care at homes in Lakewood, Arvada, and Golden, Colorado.
