Research to reduce hallucinations: Desmond and Maria’s story

How many times have you seen something out of the corner of your eye, that isn’t there on the second look? Most of us can remember at least a couple of times we’ve had to look twice. Sometimes our eyes and brain deceive us.

But for some people with Parkinson’s, this can be more than just a flash of a shadow in the corner. As many as 75% of people with Parkinson’s will experience hallucinations at some point. This means seeing, feeling, hearing, or even smelling things that aren’t really there.

For example, someone might see an insect run across the floor, or think a pile of clothes is a dog in the corner. Or perhaps they might see a loved one who has died appear in the house. They might hear someone shouting, threatening or making them feel bad. 

You can watch this video of Derek, a person with Parkinson's, explaining how he experiences hallucinations.

Hallucinations in Parkinson's can sometimes be a symptom of the condition, but in other cases can arise as a side effect of Parkinson’s medication. They can be distressing for the person experiencing them, but also for their loved ones. And because they feel so real, they can be difficult to manage. 

Uncontrolled hallucinations is one of the main symptoms that mean a person with Parkinson’s might need support from more permanent care or a care home.

In fact, at the moment there are no good medications that help control hallucinations for people with Parkinson’s. Existing medications can come with unwanted side effects. And treatments aren’t always available to everyone, as whether or not you can be prescribed it might depend on where you live in the UK.

We desperately need better, more accessible treatments to help reduce hallucinations. This is why Parkinson’s UK has been funding research to find new ways to help people manage hallucinations, whether they are a direct symptom of Parkinson’s or a side effect.

A personal experience of hallucinations

This need for better treatment is something that Desmond and his wife Maria know all too well. Desmond was diagnosed with Parkinson’s in 2008, at the age of 60. By joining Parkinson’s UK local group sessions, he became familiar with different experiences and symptoms of Parkinson’s, and was aware that hallucinations were possible.

In 2013 this became a reality for him. 

"Desmond started to see our old dogs that had passed away years ago," said Maria. "Then he started seeing people he didn’t recognise. He didn’t want to push the trolley in a supermarket because he didn’t know who was real and who wasn’t."

Desmond was aware from the beginning that what he was seeing wasn’t real. He knew they were hallucinations. And they didn’t bother him for the first few years.

But as time went on, the hallucinations became more problematic. Desmond started having vivid nightmares that would make him get out of bed for fear of being beaten. Over the coronavirus (COVID-19) lockdowns the hallucinations became more intense. He started seeing people in the house who would threaten and mock him.

Desmond and Maria spoke to their doctor about this, who tweaked Desmond’s medications to see if this could help. While they did improve a little, this soon stopped working and the hallucinations came back worse than before.

The hallucinations were particularly bad in busy environments, and sometimes caused Desmond to have panic attacks. He became withdrawn, not wanting to talk to people as it was difficult to know who was real and who was not. Maria took retirement to be able to care for Desmond, and does what she can to help.

"Desmond says the hallucinations are scared of me,” said Maria. "I sometimes shout at them to leave him alone and shake my walking stick so they go away."

The TOP HAT study

Desmond’s consultant suggested that he might like to take part in a research study looking at a potential way to treat hallucinations in Parkinson’s and Lewy body dementia, called the TOP HAT study.

The TOP HAT study involves testing a drug called ondansetron, which is currently used as an anti-sickness pill. Ondansetron also affects how the brain processes visual information which means it could be useful for treating hallucinations. And so in 2019, Parkinson’s UK announced that we would be funding a trial to test its potential.

The trial needs 306 people in total to take part across the UK. It involves taking either ondansetron, or a placebo (a pill that looks like the study drug but has no active medication in it, like a sugar pill), for 12 weeks. 

The study is being led by Professor Suzanne Reeves at University College London. Professor Reeves worked with people with Parkinson’s when designing the study, to make sure it's as easy as it can be for people to take part. For instance, making sure where possible things can be done from home, or understanding what symptoms matter most to people with Parkinson’s and should be measured in the study.

Maria and Desmond decided they would give it a go. They spent a long time chatting with their Parkinson’s nurse, and the TOP HAT research team at Peterborough hospital, to answer questions they had about taking part.

One question was that Desmond might not receive ondansetron, but instead receive the placebo (dummy pill). So he may not see any benefit himself being part of the trial. But having discussed it, they decided that this wasn’t a worry for them. 

"We felt that even if it didn’t work for Desmond, it might mean that someone else doesn’t have to go through what he’s going through."

Their biggest concern was that Desmond was given the drug and they saw an improvement. Because they knew that Desmond wouldn’t be able to take the drug after the trial, and he would likely experience hallucinations again. 

"In the end though we decided to go ahead," said Maria. "Desmond said it would be 'like taking a holiday from the hallucinations'."

Taking part

Maria and Desmond found taking part in the trial very easy. They didn’t need to change anything. Desmond just had to take one extra pill a day. The research team were friendly and explained everything in plain English, giving them lots of time to ask questions. "It was like having extra consultation appointments," said Maria. "We felt like VIPs!".

Desmond had a mix of hospital and telephone appointments, all of which Maria was able to come along to for support. "The research team were very accommodating, and allowed us to switch from video to telephone appointments when we had technical trouble," said Maria.

Maria and Desmond won’t know if Desmond was taking ondansetron or the placebo until after the trial has finished. So we can’t know whether Desmond’s experience is due to the drug working. But overall, Desmond had a positive experience while he was taking part in the study.

While Desmond was part of the trial, Maria started to see an improvement in him. He was happier, and calmer overall. "All family and friends saw a big difference in Desmond while he was on the trial," said Maria. "He became more outgoing, joking around with the researchers, and stopped having such horrible nightmares."

"One highlight for us over the 12 weeks was being able to go and see our grandson perform in a play," said Maria. "Before the drug, Desmond didn’t like the plays because of all the people. But this time he really enjoyed it. He was chatty and able to follow what was going on."

After the study

After Desmond had finished his 12 weeks as part of the study, things slowly started getting worse again. "About 2 months after we finished, Desmond was back to how he was before," said Maria. His hallucinations have since gotten a little worse.

The TOP HAT trial is still looking for people to be part of the study. "We really hope that more people will take part in the trial," Maria said. "The faster people take part, the quicker we will know if the drug has any benefit."

"I’d really encourage anyone thinking about it to take part. It was so easy, just one more pill. And the appointments are just the same as the routine appointments.

"The change in Desmond was amazing. To have a permanent treatment like that for his Parkinson’s would be like winning the lottery.

"Parkinson’s robs you of having things. I never planned anything big for retirement but being able to go for walks together again and things like that would be just great. Anything that brings you back to near normal would change lives."

You can find further information about the TOP HAT study on our Take Part Hub. There are research sites across England, Scotland, Northern Ireland and Wales.

If you think you or your family member is eligible and wish to take part, please contact the study team directly, email our team at [email protected] or phone 020 7963 9326.