New research explores people’s experience of anxiety in Parkinson’s

A new study has shown that anxiety amplifies the physical signs of Parkinson’s disease, according to people who experience both conditions.

The study, believed to be the first to explore the lived experience of anxiety for people with Parkinson’s, also revealed that study participants did not see talking therapy as a useful solution, and more support was needed for people with the conditions, along with their carers and health professionals.

Led by the University of Plymouth and Glasgow Caledonian University, the research was published in the journal PLOS ONE and saw authors conduct in-depth interviews with six people living with Parkinson’s and anxiety. The study covered three male and three female participants, each at varying stages of Parkinson’s, and uncovered primary themes that:

• Anxiety amplifies their physical Parkinson’s symptoms
• Anxiety affects their cognition and freezes the thought process
• Anxiety was ‘always there’ and they were constantly trying to find ways to cope

Crucially, it highlighted how people’s experiences of anxiety varied significantly, and there needed to be a person-centred solution to help.

One study participant said: “My own experience of anxiety is that it can be a crippling illness. I used to have panic attacks and the fear of getting one was almost worse than actually having it. I think anxiety can be a real scourge for people with Parkinson’s who suffer from it. “

Lead author, Chris Lovegrove, will now use the findings to develop a new occupation-based complex intervention to help people with Parkinson’s live well with anxiety. He has recently been awarded a Clinical Doctoral Research Fellowship by Health Education England and the National Institute for Health Research (NIHR) to pursue this.

Also practising as an Occupational Therapist at Royal Devon and Exeter NHS Foundation Trust, Mr Lovegrove said:

“There has been research into non-medical interventions, such as talking therapy, for people with Parkinson’s and anxiety, but this was the first study to speak to people themselves to understand what it’s like for them. I was fortunate to have conducted interviews with study participants in person pre-COVID, so I was able to really understand their experiences through their body language and ask ‘how are you really?’

“It was very sad to hear how hard it has been for some people, but it’s great we’re on the road to help. Ultimately, I want to produce a framework to help people with Parkinson’s live well with anxiety, as well as support their care partners and occupational therapists in the process. The findings from this research will be vital in shaping that.”

Dr. Katrina Bannigan, Head of the Department of Occupational Therapy and Human Nutrition and Dietetics at Glasgow Caledonian University, said: “I am delighted to be involved in this hugely important work looking at ways to help people with Parkinson’s cope with anxiety because there is no medication available to them, so occupational therapy is a real solution. By speaking to real people with Parkinson’s we’ve really started to gain insights into how we can improve their lives. What makes this research unique is the sheer depth of these interviews looking at their lived experience. We needed to better understand what the issues are before we could start designing interventions.”

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