3.13 Hallucinations and delusions

Some people with Parkinson’s have hallucinations, where they see, hear, feel or smell things that aren’t there. Some may have delusions, which are unusual thoughts, beliefs or worries that aren’t based on reality. These can include feelings of paranoia, jealousy or extravagance.

Side effects from Parkinson’s medication, the long-term use of this medication and other medical problems, such as infections, may be the cause of these cognitive problems. 

Keep this in mind because it is important to not always assume that a person’s condition is simply getting worse. Symptoms caused by medication or infections can be treated effectively.

Advice should be sought from a specialist or Parkinson’s nurse.

Research shows that experiencing hallucinations or delusions can have a big effect on the quality of life of people with Parkinson’s. Research also shows that hallucinations and delusions often happen when someone with Parkinson’s has problems with memory or thinking, dementia, depression, sleep problems or very strong Parkinson’s movement symptoms.

Hallucinations can affect both younger and older people in the earlier stages of the condition, but are more common in people who have had Parkinson’s for a long time. They can be a side effect of Parkinson’s medication, but not everyone who takes Parkinson’s drugs will experience hallucinations. 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 a person sees, hears, feels, smells or even tastes something that doesn’t exist. Hallucinations can affect all of the senses, not just sight.

If your client has hallucinations they may find them quite frightening. Some people will be aware that they are hallucinating, but some won’t be. How hallucinations affect someone will depend on how bad their experiences are, how other people around them respond and whether they have other mental health issues.

‘My hallucinations always featured people, and random people at that, so it was quite terrifying’

Michelle, who experienced her first hallucination 4 years after being diagnosed with Parkinson’s

What are illusions?

Illusions happen when people see things in a different way from how they look in real life. For example, a coat hanging on a door might look like a person.

What are delusions?

While illusions and hallucinations are seeing, hearing, feeling and tasting things that don’t exist, delusions are thoughts or beliefs that aren’t based on reality. Even though they’re irrational, the person experiencing them may be convinced they’re true. This can be one of the most difficult symptoms to come to terms with, especially if they have delusions about their carer or someone close to them.

Delusions can include paranoia, jealousy or extravagance (believing you have special powers). They could make your client suspicious or mistrust others, anxious or irritable. Some people with Parkinson’s experience a mixture of hallucinations, illusions and delusions.

Treating hallucinations and delusions

If a person with Parkinson’s experiences hallucinations or delusions, it is important that medical advice is sought from their GP, specialist or Parkinson’s nurse. There may be other causes for these symptoms that may be treated effectively, such as fever from a chest or bladder infection.

Actions to take

  • If the person is in an unfamiliar place (such as respite), try to make them feel as comfortable as possible. It may help to have familiar objects around them, such as family photographs.
  • Encourage the person to keep engaging and interacting with other people.
  • Take care with communication. Use familiar phrases, speak clearly, listen well and give the person time to respond to you.
  • If the person does have an infection, it must be treated early with antibiotics.
  • The person’s specialist or Parkinson’s nurse can change their drug treatment to make symptoms better. Some people will be taking medication (anticholinesterases) for dementia.
  • Many people won’t tell you when hallucinations or delusions happen, so ask if you suspect they are experiencing these symptoms. Again, their specialist or Parkinson’s nurse may be able to adjust medication to ease symptoms.
  • Where appropriate, a mental health referral may be required.

3.12 Caring for someone with Parkinson’s dementia or dementia with Lewy bodies

3.14 Exercise