Hallucinations and delusions
Some people with Parkinson’s may experience hallucinations or delusions.
A hallucination is when you see, hear or feel things that aren’t there. Delusions are unusual thoughts, beliefs or worries that aren’t based on reality.
Hallucinations and Parkinson's
Hallucinations usually happen in the later stages of Parkinson’s. They can affect both younger and older people in the earlier stages of the condition, but this is less common.
Hallucinations may be a side effect of Parkinson’s medication, but not for everyone who takes them. It depends on the exact type of medication, the dose and the person taking them.
Sometimes, the higher the dose of medication, the more chance there is of experiencing hallucinations.
What is a hallucination?
A hallucination is when you see, hear, feel, smell or even taste something that doesn’t exist.
Visual hallucinations – seeing things
You may have hallucinations where you see people, particularly relatives, animals or even insects, that aren’t there.
If you've had a visual hallucination, it is likely that you will be able to describe what you have ‘seen’ in detail.
The images may go away quickly or be remembered for a long time. This is the most common type of hallucination that people with Parkinson’s experience.
Auditory hallucinations – hearing things
You may hear sounds or voices that do not really exist, or you could be convinced you’ve heard a familiar sound, such as a door moving or a doorbell ring.
Tactile hallucinations – sensing things
This is when you think that someone or something is touching you or around or near you, when it isn’t.
Hallucinating smells and tastes
You may be able to smell something, such as smoke, or taste something you haven’t eaten.
These are a different type of hallucination.
If you experience an illusion, you will see real things in a different way from how they look in real life. For example, patterns on carpets and wallpapers may seem like they are moving or a coat hanging on a door may look like a person.
How can hallucinations affect me?
Hallucinations can be quite frightening, especially when you don’t realise that the things you see or hear aren’t real.
Some people will be aware that they are hallucinating, and some won’t be.
How hallucinations affect you will depend on how bad your experiences are, how other people around you respond, and whether you have other mental health issues.
Some people find their own ways of dealing with their hallucinations, but if you are finding it hard to cope, there are things that can be done about them.
Delusions and Parkinson's
While hallucinations are seeing, hearing, feeling or even tasting things that don’t exist, delusions are thoughts or beliefs that aren’t based on reality.
Even though they’re irrational, you may be convinced they’re true. This can be one of the most difficult symptoms to come to terms with, especially if you have delusions about your carer or someone close to you.
Delusions can include:
- Paranoia. You may believe you’re the victim of a conspiracy, or that someone is trying to hurt or harm you.
- Jealousy. You may have jealous feelings. For example, you may think that someone you love is betraying you.
- Extravagance. You may think you have special powers that you do not. This could make you act in an unusual or dangerous way.
How can delusions affect me?
When delusions are less serious, you may know what is happening and you can be helped to overcome your false beliefs.
But when delusions make people suspicious and mistrusting, they can cause problems in relationships. With a serious delusion, there is a chance you could accuse your partner or a family member of something they haven’t done.
If you have severe delusions, you may no longer be able to tell whether things are real or not. This can make you feel very anxious or irritable.
Some people with Parkinson’s experience a mixture of hallucinations and delusions. This could lead to you feeling confused and can have an impact on your day-to-day life.
Some people have paranoid delusions where they think someone is planning to cause them harm. For example, you may believe that your carer is trying to give you too much medication. This could have a big effect on how your drug regime is followed and leave you not wanting to take medication.
What should I do about hallucinations and delusions?
If you experience hallucinations or delusions, you should:
Get medical advice
If you start to experience hallucinations or delusions, or if you have had them before, and they seem to be getting worse, it is important to get advice from your GP, specialist or Parkinson’s nurse.
Rule out other causes
If you’re experiencing hallucinations, it is important to rule out causes other than Parkinson’s, such as eye problems or bad lighting.
Some other medical problems can cause hallucinations or delusions or make them worse.
Simple blood or urine tests may help to make sure that another problem, such as a fever resulting from a chest or bladder infection, is not causing your hallucinations or delusions.
Research shows that hallucinations and delusions often happen when someone with Parkinson’s also has problems with memory or thinking, dementia, depression, sleep problems or very severe Parkinson’s movement symptoms.
If you experience hallucinations at an early stage of Parkinson’s, it could be a sign of another medical condition, such as dementia with Lewy bodies.
Talk to your family and carers
It can help them to become more patient in helping to manage your hallucinations or delusions.
If you have carers at home, help them to understand what happens when you experience hallucinations or delusions, when they are most likely to happen, what makes them go away and how they can make things easier for you. This can make you feel less worried.
Research shows that experiencing hallucinations or delusions can have a big effect on the quality of life of people with Parkinson’s. It can also be very upsetting to carers and can put stress on relationships.
Sometimes carers can find it hard to cope with these symptoms and then different caring arrangements, such as nursing homes have to be considered.
To try and avoid this from happening it is very important to get medical treatment for hallucinations and delusions, or to learn ways of dealing with them when they happen.
Ask about medication
Because the hallucinations and delusions may be the result of Parkinson’s medication, your GP, specialist or Parkinson’s nurse may make some changes to your treatment.
They will aim to choose the right medication for managing both your hallucinations or delusions and your other Parkinson’s symptoms.
Your current dose may be reduced, or a type of medication may be gradually stopped to help improve these symptoms.
If this doesn’t work, then your specialist may introduce medication that can stop hallucinations from happening.
Tips for family, friends and carers
Coping with hallucinations and delusions can be stressful and tiring for people with Parkinson’s and the people who care for them.
You can support someone experiencing hallucinations or delusions in these ways:
- If someone you know with Parkinson’s is experiencing any of these symptoms, the most important thing is to seek medical advice.
- In general, hallucinations and delusions can be treated. They should improve with the right treatment and medication. You should be aware though, that for some people, this may not provide a solution.
- Don’t rely on someone telling you they are experiencing hallucinations or delusions. They may not realise what they are, or they may not want to tell you. If they seem to be behaving or reacting in a strange way, gently ask them what the matter is. If in doubt, contact your GP, specialist or Parkinson’s nurse.
- Even if the hallucinations are not upsetting or disturbing, it is still important to tell a member of the medical team if they are a new symptom.
- You should also speak to a member of the medical team if the hallucinations or delusions seem to be getting worse. Don’t wait for your next appointment.
- If hallucinations or delusions are very severe, questioning them or doubting their existence (by telling the person experiencing them that they aren’t real) may not help. It could lead to conflict and further distress.
- If you’re worried about a loved one, give lots of support and reassurance and spend some time trying to understand what they’re experiencing.
- Anxiety may make hallucinations and delusions worse. Try to find ways to help the person relax.
- Some delusions can lead to safety issues, such as someone leaving the house in the middle of the night. In these cases, advice from your specialist is crucial, as is support from other local services to help you manage at home.
- Seek support for yourself. Sometimes it helps to speak to someone independently about how another person’s hallucinations or delusions are affecting you.
- Managing hallucinations (and the support you may have to give) can be tiring for everyone. Make sure you take some time for yourself to recharge your batteries and use the support of the people you have around you. If you need extra help, speak to a healthcare professional.
- If you’re worried or have questions about these symptoms, or even about the Parkinson’s medication that you, or a family member, are taking, talk about this with your GP, specialist or Parkinson’s nurse. You can also call our helpline on 0808 800 0303.
Counselling for hallucinations and delusions
If either the carer or the person experiencing the hallucinations or delusions wants to talk with someone about the effects that these symptoms may be having, especially on close relationships, they may want to speak to a counsellor.
Many GP surgeries have counsellors attached to their practice or can give information about other local counsellors.
The British Association for Counselling and Psychotherapy and the British Association for Behavioural and Cognitive Psychotherapies can give information and details of private counsellors.
They could also speak to someone else with Parkinson’s or a carer they’ve met through their Parkinson’s UK local group – as they may have been through a similar experience.
The mental health charity Mind has a range of guides including Making Sense of Talking Treatments. This covers what counselling is, how it can help, what it involves, the types available and how to find a counsellor.
There is a small charge for this booklet if you order a copy from the website, however you can view and print it online free.
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Helpline and local advisers
Our helpline and Parkinson's local advisers are here to answer any questions you have about hallucinations and delusions.
Call us on 0808 800 0303.