Lewy Body Dementia: Symptoms, Stages and How to Care

Lewy body dementia (LBD) is the second most common type of progressive dementia after Alzheimer’s disease. It affects thinking, movement, sleep and behaviour – and symptoms can fluctuate dramatically from day to day.

Understanding what Lewy body dementia is, how it progresses, and how to care for someone living with it can help families prepare and feel more confident about the future.

What is Lewy body dementia?

Lewy body dementia is a type of dementia caused by abnormal protein deposits called Lewy bodies forming inside brain cells. These protein deposits disrupt communication between brain cells, leading to problems with:

• Memory and thinking
• Visual perception
• Movement
• Mood and behaviour
• Sleep regulation.

“Lewy body dementia” is an umbrella term covering:

• Dementia with Lewy bodies (DLB)
• Parkinson’s disease dementia.

Both are caused by the same protein deposits – the difference lies in which symptoms appear first.

Lewy body dementia accounts for around 15-20% of dementia cases in the UK.

Lewy body dementia symptoms

Symptoms can vary significantly between individuals, but common Lewy body dementia symptoms include:

• Cognitive symptoms, including fluctuating confusion or alertness, difficulty concentrating, visual hallucinations and problems with judgement and planning
• Movement symptoms, including slowness of movement, muscle stiffness, shuffling walk, tremors and frequent falls
• Behavioural and psychological symptoms, including delusions, anxiety or depression and sleep disturbances.

One defining feature of Lewy body dementia is dramatic fluctuations in awareness. A person may seem confused and withdrawn one moment, then alert and engaged shortly after.

For more information on the symptoms of Lewy Body Dementia, the Lewy Body Society has created this free guide.

Causes of Lewy body dementia

The exact causes of Lewy body dementia are not fully understood. However, it is linked to:

• Build-up of alpha-synuclein protein in the brain
• Brain cell damage in areas controlling thinking and movement.

How is Lewy body dementia diagnosed?

Diagnosing Lewy body dementia can be complex because symptoms overlap with Alzheimer’s and Parkinson’s disease.

Diagnosis typically involves:

• A detailed medical history
• Cognitive assessments
• Neurological examination
• Brain imaging (MRI or CT scans)
• Assessment of sleep and movement symptoms

Because hallucinations and symptom fluctuations are characteristic, they play an important role in diagnosis.

The 7 stages of Lewy body dementia

While progression varies, the condition of Lewy body dementia can broadly be described in seven stages:

Stage 1: No visible symptoms

In the very early stages, there are likely to be no symptoms. People can carry on with daily activities as normal, and support is unlikely to be needed at this stage.

Stage 2: Very mild changes

This is the point where people will usually begin to show symptoms. They’ll often start off as mild – and maybe something as small as forgetting names or where they’ve left things. Usually, they’ll be able to get on with life as normal but may need occasional prompts to recall certain words or locate items around the home.

Stage 3: Mild cognitive decline

This stage may be when a wider range of mild cognitive symptoms appear. This may include mild memory loss, problems concentrating or occasional falls.

Care at this stage may include:

• Help with managing appointments and sticking to a routine
• Support with daily tasks that require concentration or include a lot of different steps
• Ensuring the home is a safe environment
• Stepping in if a steady hand is needed when moving around the home, or providing support when getting out and about

Stage 4: Moderate symptoms

This is the stage where moderate symptoms tend to appear and begin making everyday tasks more difficult. A person may need constant supervision and support if living at home.

Care at this stage may include:

• Offering positive, caring and calm energy to help prevent overstimulation (e.g. reducing noise)
• Help with food preparations and meal times
• Help with managing movement issues such as tremors
• Support with getting to specialist health appointments
• Help with daily household tasks
• Personal care, such as getting washed and dressed in clean and appropriate clothing for the day ahead
• Reducing daytime napping and supporting restful sleep during the night
• Managing challenging behaviours or changes in mood
• Reducing the risk of falls by offering support with balance and moving around safely

Stage 5: Moderately severe decline

People with dementia at this stage will likely need a lot more help to perform daily tasks and maintain a routine.

Care at this stage may include:

• Providing sensitive support with recalling information and managing confusion
• Responding to and managing changes in how a person communicates
• Offering reassurance if a person becomes disorientated, forgets where they’re going, or gets up during the night
• Help with shopping, cleaning, and managing daily life
• Looking out for signs of fever or infection and raising any concerns with the right health care professionals
• Coping with delusions and hallucinations
• Helping a person feel safe and distracting them by moving to another room or going outside for a walk
• Daily support with preparing meals, eating and self-care

Stage 6: Severe dementia

As well as the support we’ve previously covered, at this stage a person may also need:

• Help to manage urine and bowel incontinence and support with toileting
• On-going support to ensure they’re drinking enough
• Communication support, to recognise and translate non-verbal cues

Stage 7: Very severe dementia

This is the stage where symptoms can become very intense and a person is likely to need 24-hour care. It may also include palliative care.

How quickly does Lewy body dementia progress?

Progression varies widely. On average, symptoms worsen gradually over 5-7 years after diagnosis, but some people experience:

• Faster decline
• Periods of sudden deterioration
• Fluctuating ability rather than steady decline.

Treatment for Lewy body dementia

There is currently no cure for Lewy body dementia, and treatments cannot stop the condition from progressing. However, a range of treatments can help manage symptoms and improve quality of life.

Treatment for Lewy body dementia focuses on managing symptoms and helping people maintain independence for as long as possible.

Common treatments include:

• Medication to help manage symptoms such as hallucinations, confusion, sleep problems and movement difficulties.
• Therapies, including physiotherapy, occupational therapy and speech and language therapy, to support mobility, daily activities and communication.
• Cognitive and psychological support, such as cognitive stimulation therapy, which uses structured activities to support memory and thinking skills.
• Support groups and dementia-friendly activities, such as dementia cafés, which offer advice and social support for people with dementia and their carers.

Treatment plans are usually reviewed regularly, as symptoms can change over time. For more information about Lewy body dementia treatment, read the NHS’ guide.

Getting extra support at home

As Lewy body dementia progresses, symptoms such as movement difficulties, sleep disturbances, confusion and visual hallucinations can make everyday life more challenging. These symptoms can also fluctuate from day to day, meaning the level of support a person needs may change over time.

For many families, live-in care can provide the consistent support needed to manage these complex symptoms at home.

With live-in care, a dedicated carer moves into your loved one’s home to provide one-to-one support throughout the day and night. They can help with personal care, mobility, medication routines, meals, and offer reassurance during periods of confusion or sleep disruption.

Remaining in familiar surroundings and maintaining daily routines can be especially helpful for someone living with Lewy body dementia, and live-in care allows families to provide this stability while ensuring their loved one receives the support they need.

How Elder can help

At Elder, we help families find experienced self-employed live-in carers who can provide personalised support tailored to your loved one’s needs.

If you’re unsure what type of care may be most suitable, our expert care advisors can talk through your situation and help you understand the options available.

Speak with a care advisor