How to cope when someone with dementia is hallucinating

If your loved one has already experienced a hallucination you may have found it very scary and difficult to watch. Find out what you need to know about them and the best way to cope

In a nutshell

A hallucination can involve seeing, hearing, smelling, feeling, tasting (or a combination of them all) something that isn’t there. Hallucinations are caused by changes in the brain which, if they occur at all, usually happen in the middle or later stages of the dementia journey. Hallucinations are more common in dementia with Lewy bodies and Parkinson’s dementia but they can also occur in Alzheimer’s and other types of dementia.

But
- There’s a difference between a hallucination and a delusion, which is usually caused by paranoia or suspicious feelings and thoughts.
- Some ‘hallucinations’ are simply visual mistakes caused by eye sight problems which are quite common in people with dementia (see below).

Did you know? Around one in 10 people with dementia with Lewy bodies experience olfactory hallucinations - smells that aren’t really there.

Is it really a hallucination?

First make sure that what you’re dealing with is a hallucination caused by dementia and not simply the result of:

Eye sight problems
Dementia can affect sight and vision in many different ways. For example, a person with dementia might mistake a reflection in the mirror for an intruder or think people on TV are in the room with them. They could also have problems recognising familiar faces or become wary of familiar environments, for example, a shiny floor might look wet, a shadow in a corner might look like a hole.
So before assuming they’re having a hallucination, arrange a sight test with an optician and make sure each room in the home is well lit and dementia friendly.

Other health issues
A kidney or bladder infection, alcohol, and certain medications (such as some anti-depressants, stroke or migraine medication and drugs for Parkinson’s) can also cause confusion and lead to hallucinations.

Dealing with hallucinations

Don’t try to reason with your loved one because it simply won’t work. In fact, knowing you don’t believe them might make them even more upset and agitated.

Do stay calm. Your loved one isn’t going mad, what they’re seeing is simply a symptom of their illness. You could try saying something such as ‘Don’t worry, I’ll take care of you, I’m here to protect you.’

Don’t pretend you can see or hear what they can. It won’t help and it could make your loved one even more confused or agitated.

Do check your environment. Turn off the TV, turn on lights so the room is well lit, turn off anything that might be triggering a hallucination such as a TV, a computer, a radio.

Don’t diminish their experience. Saying ‘Oh, don’t be silly there’s nothing there’, is quite demeaning because it belittles what they’re seeing, which to them is very real indeed.

Do be kind and acknowledge how your loved one might be feeling during the hallucination. For example, ‘It sounds very scary, I can see how upset you are.’

Do distract the person you’re caring for if possible. For example, if they’re hearing voices that aren’t there, try chatting to them. It’s harder to hear voices if someone is really talking to you. If they can ‘see’ someone, sit facing them and get eye contact if you can. Again, if they can see you clearly during the hallucination it could make the experience less powerful and less intense.

Need more help?

If your loved one is still becoming very distressed by hallucinations:

1. See your GP but make sure you take some notes with you about the hallucinations. For example, how long they last, what they involve, what time of day they happen and details of any medication they might already be taking.

2. If nothing else seems to help, you may want to consider anti-psychotic medication. Anti-psychotics do carry risks and have, unfortunately, often been oversubscribed in the past but they can be very effective in reducing or stopping hallucinations, so don’t automatically discount them if your loved one is really suffering.

BUT If the person you’re caring for has dementia with Lewy bodies any prescription for anti-psychotics must be strictly monitored and regularly reviewed.

Good to know

Many carers say that activities which help to reduce anxiety such as art or music therapy reminiscence or pet therapy, have helped their loved ones cope with hallucinations. Find out what else might work here in our community forums.