Mindfulness and Parkinson’s

Taking care of our mental health has become a top priority for most of us, especially since the coronavirus pandemic started, and society has come a long way in acknowledging and talking about mental health. However, there is still work to be done, and different self-management strategies are still being explored to understand what helps. Is it yoga? Is it using specially designed apps? Is it taking a break and reading a book? The answer is different for everyone, but the act of mindfulness has become a popular choice.

According to the charity Mind, we now know 1 in 4 people in the UK experience some form of mental health problem in any given year, and people with Parkinson’s may experience difficulties even more frequently. When thinking of typical symptoms for Parkinson’s, you wouldn’t automatically think of non-motor symptoms such as anxiety, depression, or even disturbed sleep. Still, they do exist, and have a significant impact on someone’s quality of life. Depending on the scale used, it is estimated that up to 50% of people with Parkinson’s are affected by depression, and up to 31% report some level of anxiety. 

Further to this, Parkinson’s UK carried out a survey last year to see how coronavirus lockdown restrictions were affecting people with Parkinson’s. 42% of the 2,000 people who took part said that lockdown was negatively affecting their mental health, so further research to find better ways to manage these symptoms is vital. Read the full survey results.

More and more research is being done in this area to understand and find ways to better manage anxiety and depression in Parkinson’s. We caught up with Dr Angeliki Bogosian, a leading researcher in the area of mindfulness, to hear about her latest research, funded by Parkinson’s UK, and asked some key questions.

Our expert: Dr Angeliki Bogosian

Angeliki is a Senior lecturer in Health Psychology at City, University of London. Her work focuses on how individuals and families adjust when affected by a long-term health condition and looks at mindfulness interventions for people with long-term conditions, such as Parkinson’s.

What is mindfulness?

Mindfulness is often mistaken for relaxation, meditation or yoga, most people think it’s a simple calming exercise. But mindfulness is a lot more than that. It’s a technique to help people stay in the moment and gain more control over the effect their thoughts, feelings, and symptoms have over their lives.

Jon Kabat-Zinn established the 8-week mindfulness based stress-reduction courses in the 1970s and are what most programs are based on today. Usually, mindfulness courses involve weekly group meetings and daily meditation practices. There is research evidence showing that mindfulness can help reduce anxiety and depression, which may explain why there has been an increase in mindfulness and mental awareness since the start of the coronavirus pandemic.

When you are anxious, you are more likely to be worried about the future, so by learning to let go of these thoughts and come back to the present moment, this hopefully alleviates some of the anxiety. Mindfulness is difficult to carry out because the human brain is so complex, but it has real benefits that go beyond just helping with anxiety and depression. It can help you learn self-compassion, acceptance and patience, and help reduce stress, amongst other things too. These are all things that the participants of the research study learned over the 8-week course.

Tell us about your research

My research was a pilot study investigating whether delivering online mindfulness sessions benefit people with Parkinson’s. The study involved 60 people with Parkinson’s who were randomly allocated to either the 8-week mindfulness group or a waiting list group. Everyone was eventually offered the mindfulness course. Everyone completed questionnaires on anxiety, depression, quality of life, sleep and pain, before they were randomised into groups, at 8 weeks and at 20 weeks. Over 8 weeks, groups of 5 people had 1 hour of mindfulness training a week over Skype, with a further 20 minutes of daily meditation at home.

One example of the techniques taught to participants was a 5-minute breathing exercise. Participants were asked to focus on their breathing, acknowledging physical sensations, thoughts and emotions they might have at that moment but always returning to noticing the breath. This exercise helped participants re-group when feeling stressed.

Overall, the results showed that the mindfulness training was positive. Although there was no significant change in depression and anxiety scores of the participants, there was an improvement in quality of life assessments, and after 3 months, symptoms were still well managed. Further, in the post-course interviews, participants spoke about enjoying the course, especially the connections they made with other members of the groups. This shows that there are benefits to mindfulness training which is something that I hope to explore in further research.

My team planned to recruit participants to the study over 6 months but there was so much interest that it only took a few days, showing that there is a need for something to help anxiety and depression for the Parkinson’s community.

People with Parkinson’s also played a huge part in shaping the research. Volunteers were involved from the very beginning, from the grant proposal for Parkinson’s UK funding to the mindfulness booklet that was given to every participant. Within the booklet were examples relevant to people with Parkinson’s, which people found helped understand the mindfulness course ideas and techniques, and ultimately led to the mindfulness training being successful and relatable.

Read the full study results on the Sage Journals website.

How can mindfulness help people with Parkinson’s?

Mindfulness can potentially help people adjust to life with a long term health condition and manage unpleasant symptoms. There is emerging evidence that mindfulness training benefits people with Parkinson’s. Many of the people taking part in my research said that they felt anxious about their diagnosis’s unknown future. Not knowing what symptoms could develop next and how their body will react. However, in the post-course interviews, participants said that discussing anxiety and life experiences as a group and finding out what the future may hold for other people with Parkinson’s helped reduce their own anxiety.

Also, carrying out the mindfulness training in an online format was a positive thing for the people who took part in the research. Being online allows people to overcome barriers that already exist for people with Parkinson’s, such as lack of time, finding it hard to travel or research centres being located too far away.

What are the next steps?

My research team and I are continuing to develop mindfulness training and exploring the benefits of mindfulness for people with Parkinson’s further. So watch this space.

Special thanks to Dr Angeliki Bogosian for her help writing this blog.

Continuing with mindfulness

Angeliki’s research paper summarising the study and the results was published in January 2021 which led to some of the participants getting in touch to share that they had continued using the mindfulness techniques from the research trial. 

Everybody manages their symptoms differently but if you are interested in exploring mindfulness, please visit our Mindfulness and Parkinson's page.