Dementia With Lewy Bodies

Overview

Dementia with Lewy bodies (DLB) is a type of dementia. Dementia is a brain condition that slowly affects memory, thinking, movement, sleep, and behavior. In DLB, tiny clumps of protein called Lewy bodies build up inside brain cells. These clumps damage brain cells and disturb the chemicals the brain uses for thinking, movement, and mood. DLB can look a lot like Alzheimer's disease or Parkinson's disease, and sometimes people have features of more than one condition.

DLB is less common than Alzheimer's disease, but it is still one of the more common types of dementia. It is thought to make up a small but important share of all dementia cases.

DLB usually affects older adults, most often after age 65. It can sometimes start in younger people. It appears to be slightly more common in men than in women. It is not a childhood condition.

Symptoms

Common symptoms

• Alertness and thinking that change from day to day, or even during the same day. A person may be clear and sharp at one time and very confused later.
• Seeing things that are not there, called visual hallucinations. These are often detailed and may include people or animals.
• Movement problems such as slow walking, stiff muscles, shuffling, balance problems, or falls.
• Sleep problems, especially acting out dreams by moving, talking, or shouting during sleep.
• Memory problems that may be less obvious at first than in Alzheimer's disease, but often become more noticeable over time.
• Trouble judging distances, finding the way, or doing tasks that involve seeing and moving, such as dressing or using stairs.
• Mood changes such as depression, anxiety, apathy, or feeling easily upset.
• Autonomic symptoms, which are body functions that happen automatically, such as dizziness when standing, constipation, urinary problems, or changes in body temperature control.
• A strong reaction to some medicines, especially medicines that affect the brain. This can cause sudden confusion, stiffness, or worsening symptoms.

Symptoms in children

• Dementia with Lewy bodies is not a childhood condition. It almost always affects adults, usually older adults.

Symptoms in older adults

• Older adults with DLB often have a mix of thinking changes, visual hallucinations, movement problems, and sleep problems.
• Falls and balance problems are common and can lead to injuries.
• Infections, dehydration, and medicine changes can cause a sudden worsening of confusion.
• Symptoms may be mistaken for delirium, Parkinson's disease, or Alzheimer's disease at first.

Causes

Main causes

• DLB is caused by abnormal clumps of protein called Lewy bodies building up inside brain cells.
• These clumps damage nerve cells and reduce important brain chemicals that help with thinking, movement, sleep, and mood.
• DLB is not contagious. It is not caused by something a person did or by poor lifestyle alone.

Risk factors

• Getting older is the strongest risk factor.
• Having a close family member with DLB, Parkinson's disease, or another dementia may raise the risk slightly.
• Being male appears to raise the risk slightly.
• The exact cause is not fully understood, and most cases happen without a clear family pattern.

When to see a doctor

See a doctor urgently if:

• A sudden severe change in confusion, alertness, or behavior.
• Hallucinations or agitation that make the person or others unsafe.
• A fall with head injury, loss of consciousness, or new weakness.
• Trouble swallowing, breathing, or staying hydrated.
• Fever with stiffness, drowsiness, or a reaction after a medicine change.
• Thoughts of self-harm or suicide.

Book a routine appointment if:

• Memory or thinking changes that are getting in the way of daily life.
• Seeing or hearing things that are not there.
• Acting out dreams during sleep.
• Slow movement, stiffness, tremor, balance problems, or repeated falls.
• Mood changes, anxiety, or loss of interest in usual activities.
• Any concern about dementia or brain health.

Diagnosis

There is no single test for DLB. A doctor makes the diagnosis by taking a detailed history, talking with the person and people who know them well, doing a physical and memory exam, and ordering tests to rule out other causes. A specialist such as a memory clinic doctor, neurologist, or psychiatrist may be involved. Diagnosis can take time because DLB shares features with other conditions.

Tests that may be done

• Blood tests to check for vitamin problems, thyroid problems, infections, and other causes of confusion.
• Memory and thinking tests, sometimes called cognitive tests.
• A neurological exam to check movement, balance, reflexes, and senses.
• Brain scans such as CT or MRI to look for strokes, tumors, or other brain changes.
• A special brain scan that looks at dopamine activity, which can help tell DLB from some other conditions.
• A sleep study if acting out dreams is a major problem.
• A heart scan that checks nerve activity, used in some specialist settings.
• Review of all medicines, because some medicines can worsen confusion or movement problems.

What to expect at your appointment

The assessment may take more than one visit. Bring a list of medicines, notes about symptoms, and, if possible, someone who knows the person well. Keep a simple diary of good days and bad days, hallucinations, sleep problems, falls, and medicine changes. This helps the doctor see patterns. You may be referred to a memory clinic or specialist team for more advice.

Treatment

There is no cure for DLB. Treatment focuses on managing symptoms, keeping the person safe, supporting thinking and movement, and helping the person and family live as well as possible. Care should be tailored to the person and reviewed regularly.

Self-care at home

• Keep a regular daily routine and familiar surroundings.
• Use calm lighting and reduce clutter to lower the chance of confusion and falls.
• Write down medicine changes, symptoms, and triggers in a diary.
• Stay physically active in safe ways, such as walking with support or doing seated exercises.
• Keep socially connected and take part in enjoyable activities.
• Protect sleep with a regular bedtime and a calm, dark bedroom.
• Make the home safer with good lighting, handrails, and clear walkways.
• Plan ahead for driving, finances, and future care wishes while the person can take part.

Medical treatments

Doctors may use medicines to help with memory, movement, sleep, mood, or hallucinations. People with DLB can react badly to some medicines, especially sedating medicines that affect the brain, so all medicine changes should be supervised by a healthcare professional. Treatment often includes physical therapy, occupational therapy, speech and language therapy, counseling, and support from dementia services. The goal is to reduce distress, improve function, and avoid medicines that cause harm.

When is surgery considered?

Surgery is not a treatment for DLB. Surgery may be needed for other health problems, but the care team will take extra care with anesthesia and medicines because people with DLB can be sensitive to them.

Living with this condition

Day-to-day life with DLB works best with a calm, predictable routine. Good days and bad days are part of the condition. Use a simple diary to spot patterns and triggers. Reduce clutter, improve lighting, and label doors or drawers if that helps. Encourage activities that are enjoyable and not too tiring. Plan rest times. Family and carers should also look after their own health and ask for help early.

Lifestyle tips

• Keep a regular routine for meals, sleep, and activities.
• Stay socially connected with family, friends, and support groups.
• Use gentle exercise and balance activities that are safe for the person.
• Avoid too much alcohol, which can worsen confusion and falls.
• Keep the home safe and well lit.
• Plan ahead for appointments, finances, driving, and care needs.
• Ask about respite care so carers can rest.

Diet and exercise

A balanced diet and enough fluids help overall health and can reduce confusion caused by dehydration. Choose foods you enjoy and can prepare safely. Gentle exercise, such as walking with support, seated exercises, or physical therapy, can help movement, mood, and balance. Ask a healthcare professional or physiotherapist what exercise is safe.

Mental health and emotional wellbeing

Depression, anxiety, and frustration are common in DLB, for both the person and their carers. These feelings are understandable and treatable. Talk to a healthcare provider about mood, sleep, and stress. If you or someone you care for has thoughts of self-harm or suicide, contact your local emergency number or a crisis support service right away.

Prevention

There is no proven way to prevent DLB. General brain-health steps such as staying active, eating well, keeping blood pressure healthy, staying socially connected, and protecting the head from injury may help overall health and may support brain health. They do not guarantee prevention.

Vaccines

There is no vaccine to prevent DLB.

Screening programmes

There is no routine screening test for DLB. If you have concerns about memory, movement, sleep, or hallucinations, talk to a healthcare provider.

Complications

If left untreated

• Higher risk of falls and injuries.
• More confusion and distress from infections, dehydration, or medicine side effects.
• Swallowing problems that can lead to poor eating, drinking, or chest infections.
• More independence being lost over time.
• Carer stress and burnout.
• Safety risks if hallucinations or sleep problems are not managed.

Long-term outlook

DLB is a progressive condition, meaning symptoms change over time. The speed of change varies a lot from person to person. Many people live for years after diagnosis. Early support, careful medical care, safety planning, and family and carer support can make a real difference to quality of life.

Find support

External links open third-party websites. Ruqelo Health is not responsible for external content. Listing an organisation does not imply endorsement.