How have coronavirus (COVID-19) restrictions impacted people affected by Parkinson’s?

With Lancaster University, we conducted a survey that shows the coronavirus restrictions are having a big impact on the lives and the health of people affected by Parkinson’s.

We asked more than 2,000 people with Parkinson’s and their family members, friends and carers across the UK about their experience of lockdown. Professor Jane Simpson and Dr Fiona Eccles from Lancaster University analysed the survey findings, which revealed:

  • 34% said reduced access to exercise had a big impact on their lives
  • 34% also said that appointments with their Parkinson’s Nurse or consultant were cancelled and more than half were not offered a phone or online appointment
  • of those who received social care and support at home before lockdown, 48% received less care during restrictions.

The impact on health

A third of people with Parkinson’s have seen their health deteriorate and experienced increased symptoms during lockdown. For people with Parkinson’s, we found:

  • more than a third have experienced an increased slowness of movement, stiffness and fatigue
  • more than a quarter have experienced increased tremor, anxiety and sleep problems
  • a tenth have also reported an increase in hallucinations.

Beverley, who was diagnosed with Parkinson’s in 2014, responded to the survey and said:

“My Parkinson’s symptoms have absolutely been flaring up in lockdown, stress seems to accentuate reactions in my body, and my tremor has been much worse. In lockdown I try to stay calm and chalk my worsening symptoms up to stress, but it’s impossible to know: Is it just my Parkinson’s developing? Living alone, I don’t have anyone to bounce those thoughts off of, who can reassure me or say, ‘Actually, you have seemed worse lately.’ It’s scary.”

A knock-on effect on mental health

Many people feel isolated, with almost 75% of respondents saying socialising with family and friends has become more difficult. People also reported an increase in stress levels. This was particularly around access to food for those with advanced symptoms, and this stress exacerbated their physical symptoms.

Measured with a validated scale, the mental health and wellbeing of people with Parkinson’s responding to the survey was more than 5 points lower than the average score for the general population in non-lockdown times. Many said they needed emotional support.

The impact has also been felt on those with caring responsibilities. For family, friends and carers, 68% have taken on more caring responsibilities since the coronavirus restrictions started. 42% said the restrictions were negatively affecting their mental health, and 34% their physical health.

Evolving support

While some people with Parkinson’s are choosing to shield, they are not classed as extremely vulnerable and are therefore not eligible for the increased level of support. In England, this situation has improved in recent weeks with people with Parkinson's now able to access the NHS responder service.

During the pandemic, at Parkinson’s UK we’ve been adapting to reach the community in new ways. This includes moving exercise classes online, and providing up to date, tailored information for everyone affected by the condition. 

Katherine Crawford, Director of Services at Parkinson’s UK, said:

“Unfortunately these results show just how hard the Parkinson’s community has been hit by the Coronavirus crisis, both physically and emotionally.

“In response, we have boosted our helpline capacity, built the online Parkinson’s community and made sure people who normally receive our face-to-face support continue to do so in new ways.”

Lockdown restrictions are starting to lift, and life is moving towards something more normal. But Parkinson’s didn’t stop for coronavirus, and neither did we. We’ve transformed support to meet people’s needs during the pandemic. And we also rapidly adapted our pioneering research. Together, we’ll continue to support people in the ways they need most.

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