Lewy Body Dementia Hallucinations: Seeing People or Animals and What to Do

What can Lewy body hallucinations look like?

Hallucinations can involve any sense, but visual hallucinations are especially common in Lewy body dementia. They may be detailed and recurring: people, children, animals, insects or figures at the edge of vision. Some are neutral or even comforting; others are frightening and can lead to worry, suspicion or attempts to respond to what is seen.

A hallucination is different from a misperception. A patterned curtain, coat on a chair or shadow may be mistaken for a person or animal. Poor lighting, tiredness and changes in eyesight can make misperceptions more likely, so it is worth checking the surroundings as well as listening to what the person describes.

How to respond in the moment

Stay calm, speak gently and first find out whether the person is frightened. You can acknowledge their experience without pretending you can see it: ‘I cannot see the dog, but I can see that it feels real and worrying.’ If the hallucination is not distressing or unsafe, there may be no need to challenge it.

Avoid arguing, laughing or repeatedly insisting that it is not real. Move to a better-lit room, remove a confusing object, offer a familiar activity or sit nearby. If the person is trying to act on the hallucination, such as leaving the house or swatting at something near stairs, make the immediate area safe and stay with them.

Check for triggers and other causes

A quick pattern diary can help. Note the time, lighting, sleep, food and drink, pain, infection symptoms, vision or hearing problems, recent falls and any medicine changes. Hallucinations may increase in the evening, when the person is tired or in a visually confusing environment.

A new sudden hallucination or a sharp change from the person's usual pattern can also be caused by delirium, illness, a medicine effect, stroke or another health problem. Do not assume every new experience is part of Lewy body dementia.

Small environment changes that can help

Try one change at a time so you can see what makes a difference.

• Use even, warm lighting and close curtains before reflections and shadows build up
• Remove or cover objects repeatedly mistaken for people or animals
• Check that glasses and hearing aids are clean, available and working
• Reduce background television, busy patterns and visual clutter
• Keep a predictable evening routine and offer rest before overtiredness
• Use music, a drink or a simple shared task to redirect attention

Medicines need specialist care

Never start, stop or alter medicines because of hallucinations without the prescriber. People with Lewy body dementia can be particularly sensitive to some antipsychotic medicines, which may cause serious harmful reactions. Make sure the diagnosis is known to clinicians who are considering new medicines.

A GP, memory service, neurologist or psychiatrist can assess whether a physical cause, medicine review or specialist treatment is appropriate. The right decision depends on distress, risk, other symptoms and the person's overall health.

When to get urgent help

Get urgent medical advice for sudden confusion, new severe hallucinations, fever or signs of illness, a major change in alertness, a fall or injury, or behaviour that creates immediate risk. Call 999 for stroke symptoms, serious injury, immediate danger or a life-threatening emergency. NHS 111 can guide you when you are unsure whether the situation is urgent.

Tell clinicians exactly what changed and when. A short description such as ‘started seeing people today and is much more drowsy than usual’ is more useful than simply saying ‘the hallucinations are worse.’

The bottom line

Vivid visions of people or animals can be part of Lewy body dementia and may feel completely real. Respond to fear, improve safety and reduce visual triggers rather than trying to prove the person wrong.

Treat a sudden or markedly worse pattern as a health concern, and make sure prescribers know about Lewy body dementia before medication changes are made.