Understanding Lewy body dementia stages can help people living with the condition, family members and caregivers prepare for changes that may occur over time.
However, Lewy body dementia (LBD) does not progress in a perfectly predictable sequence. Symptoms can fluctuate from day to day and even within the same day, and two people with LBD may have very different experiences.
For this reason, early, middle and late stages are best viewed as a practical way of understanding progression rather than three official medical stages that everyone passes through in exactly the same way.
Below we explain how Lewy body dementia generally progresses, the changes that may occur during early, middle and later disease, and how care needs can change.
What Is Lewy Body Dementia?
Lewy body dementia is a progressive brain disorder associated with abnormal deposits of a protein called alpha-synuclein. These deposits are known as Lewy bodies.
According to the National Institute on Aging, Lewy bodies affect brain chemicals and can eventually cause problems with thinking, movement, behavior, mood, sleep and automatic body functions.
Lewy body dementia includes two closely related conditions:
- Dementia with Lewy bodies (DLB), where cognitive symptoms develop before or around the same time as movement symptoms.
- Parkinson’s disease dementia, where dementia develops after a person has been living with Parkinson’s disease and its movement symptoms.
As time passes, people with the two conditions may develop many of the same symptoms.
LBD usually begins in people aged 50 or older, although younger people can also develop it.
Common symptoms can include changes in attention and thinking, visual hallucinations, sleep disturbances, Parkinson’s-like movement symptoms, changes in mood and problems with automatic body functions such as blood pressure, digestion and bladder control.
You can read more about these in our guide to Lewy body dementia symptoms.
How Does Lewy Body Dementia Progress?
Lewy body dementia is progressive, which means symptoms generally become more significant over time.
One of the features that makes LBD different from many other conditions is cognitive fluctuation.
A person may appear relatively alert and capable at one time but become confused, sleepy or unable to concentrate later that day. They may then appear considerably better again.
These fluctuations do not necessarily mean the person has suddenly moved from one stage of dementia to another.
The speed of progression also varies considerably.
The National Institute on Aging reports that people with LBD live an average of about five to seven years from diagnosis, although the range can be approximately two to 20 years. Age, general health, symptoms and other medical conditions can all influence an individual’s course.
These figures are population averages and cannot predict how long any particular person will live.
Lewy Body Dementia Stages: A Practical Guide
There is no single universally accepted staging system that divides Lewy body dementia neatly into three clinical stages.
However, thinking in terms of early, middle and late changes can make it easier for families to understand increasing symptoms and care needs.
Importantly, symptoms can overlap between these stages.
Early Lewy Body Dementia
During early LBD, symptoms may be mild enough that the person remains largely independent.
Memory problems are not always the most noticeable early symptom. Difficulties with attention, problem-solving, planning and visuospatial abilities may be more prominent.
Possible early changes include:
- Fluctuations in attention, concentration or alertness
- Detailed visual hallucinations
- REM sleep behavior disorder, where a person physically acts out dreams
- Mild stiffness, slowness or other Parkinson’s-like movement changes
- Changes in balance or walking
- Excessive daytime sleepiness
- Constipation or changes in bladder function
- Dizziness when standing because of changes in blood pressure
- Apathy or loss of initiative
- Anxiety or depression
- Changes in visual perception or judging distance
A person may still work, socialize and manage many everyday activities during this period.
However, some tasks such as managing finances, medications, appointments or driving may gradually become more difficult.
This can be a good time to establish a knowledgeable medical team, make the home safer and discuss future preferences while the person can participate fully in decisions.
The National Institute on Aging also recommends considering advance health care, legal and financial planning early rather than waiting until decision-making becomes more difficult.
Middle Lewy Body Dementia
As LBD progresses, difficulties with thinking and movement generally have a greater impact on everyday life.
The person may still be capable of many activities but require increasing supervision or assistance.
Changes may include:
- More noticeable cognitive fluctuations and periods of confusion
- Increasing difficulty planning or completing complex activities
- More pronounced stiffness and slowness of movement
- Problems with balance and an increased risk of falls
- Increasing difficulty walking
- Changes in speech or a softer voice
- Difficulty swallowing
- Delusions or paranoia
- Hallucinations
- Changes in mood or behavior
- Increasing problems with blood pressure, constipation or incontinence
- Greater daytime sleepiness or other sleep problems
Some people may still manage personal activities such as dressing, eating or bathing independently, while others require substantial help.
There is no fixed point at which independence suddenly disappears.
Occupational therapy can help identify ways to make everyday activities safer and easier, while physical therapy can assist with movement, balance and fall prevention.
Speech-language pathologists may help with speech and swallowing problems.
Late-Stage Lewy Body Dementia
During later Lewy body dementia, the person generally requires much more assistance with everyday activities.
According to the National Institute on Aging, people in the later stages may eventually depend entirely on others for care.
Possible changes include:
- Severe problems with thinking and communication
- Greater confusion and difficulty understanding surroundings
- Significant muscle rigidity and reduced mobility
- Frequent falls or inability to walk independently
- Difficulty transferring between a bed, chair and other positions
- Increasing dependence for dressing, bathing and toileting
- More frequent bladder or bowel incontinence
- Difficulty speaking clearly or speaking very softly
- Difficulty chewing or swallowing
- Increased choking or aspiration risk
- Greater need for help with eating and drinking
- Longer periods of sleep or reduced activity
- Increasing dependence for medications and other daily needs
Care needs at this point can become substantial.
Equipment, home modifications, professional caregivers or residential care may eventually be needed depending on the person’s circumstances.
Swallowing problems deserve particular attention because food or liquid entering the lungs can lead to serious complications.
A speech-language pathologist can assess swallowing and advise on safer ways to eat and drink.
Palliative care may also become increasingly valuable. Palliative care focuses on comfort, symptoms, quality of life and ensuring that treatment reflects the person’s goals and preferences. It can be introduced alongside other medical treatment and does not need to wait until the final days of life.
Why Lewy Body Dementia Can Be Difficult to Stage
LBD progression is not always a straight downward line.
The Lewy Body Dementia Association describes unpredictable changes in concentration, alertness and attention as a characteristic feature of the disease.
A person might appear much more impaired one afternoon and function considerably better the following morning.
Different symptoms may also progress at different speeds.
For example, one person may develop significant movement problems relatively early while another may have little difficulty with movement for several years.
For this reason, caregivers should look at the person’s overall pattern of function rather than assuming that one particularly difficult day represents a permanent move into a new stage.
Sudden Changes Should Not Automatically Be Blamed on LBD
Although fluctuation is common, a sudden or major deterioration should still be discussed with a healthcare professional.
Infections, pain, dehydration, constipation, medication side effects, sleep problems and other medical conditions can cause sudden confusion or behavioral changes.
The National Institute on Aging advises reporting major changes in function, symptoms or behavior to the person’s doctor.
Some of these causes may be treatable.
An Important Medication Warning With Lewy Body Dementia
People with Lewy body dementia can be unusually sensitive to certain medications.
This is particularly important when hallucinations, delusions or agitation become more prominent.
The Lewy Body Dementia Association warns that some people with LBD can experience severe reactions to antipsychotic medications, including worsening confusion, heavy sedation and increased Parkinson’s-like symptoms.
Traditional antipsychotic medications can be particularly problematic.
Because of these sensitivities, medication choices should be made by a healthcare professional who understands Lewy body dementia.
Do not start, stop or alter prescription medication without discussing it with the person’s doctor.
Planning Care as Lewy Body Dementia Progresses
The amount of support needed usually increases as LBD progresses.
A comprehensive care team may include a primary care physician, neurologist, occupational therapist, physical therapist, speech-language pathologist, mental health professional and other specialists depending on the person’s symptoms.
The National Institute on Aging recommends preparing for future changes before they become urgent.
This may include:
- reviewing home safety and fall risks
- discussing driving when appropriate
- planning for increasing assistance with daily activities
- discussing future health care wishes
- considering advance directives and health care decision-making arrangements
- obtaining appropriate legal and financial advice
- identifying home care or residential care options before they are urgently needed
The details of legal documents vary by location, so families should obtain appropriate local professional advice.
When to Contact a Doctor
Contact the person’s healthcare team if there is a significant or sudden change in their condition.
This is particularly important with:
- repeated falls or fainting
- new difficulty walking
- choking or difficulty swallowing
- sudden or severe confusion
- new or dramatically worsening hallucinations or delusions
- significant changes after starting or changing medication
- fever or other signs of infection
- behavior that places the person or others at risk
A sudden deterioration does not necessarily mean the dementia has rapidly progressed.
Closing Remarks
Understanding Lewy body dementia stages can help families anticipate how care needs may change, but no staging system can precisely predict an individual’s experience.
LBD is particularly variable because thinking, alertness, movement, sleep, behavior and automatic body functions can all change at different rates.
Early in the disease, many people remain relatively independent. As symptoms progress, increasing assistance is usually needed, and in later LBD some people become completely dependent on others for their daily care.
An early and accurate diagnosis is valuable because it allows the person and their family to build an appropriate care team, address medication sensitivities and plan ahead.
There is currently no cure for Lewy body dementia, but some symptoms can be treated or managed and supportive care can help maintain quality of life.
If you or someone you care for is experiencing symptoms of LBD, discuss them with a doctor familiar with dementia.
References and Further Reading
National Institute on Aging. Lewy Body Dementia: Causes, Symptoms, and Diagnosis.
National Institute on Aging. How Is Lewy Body Dementia Treated and Managed?
Lewy Body Dementia Association. Symptoms of Lewy Body Dementia.
