Parkinson’s disease and loneliness: “people are hungry for some connection”

Dr Indu Subramanian, a movement disorder neurologist based in Los Angeles, US, shares why social engagement is crucial for the wellbeing of people with Parkinson’s disease – and how Covid-19 has “magnified” the challenges caused by loneliness

“Humans are social creatures – and we need connection just like we need water and shelter.”

Before Covid-19 began to spread in the US, movement disorder neurologist Dr Indu Subramanian and her team were conducting research into the effect of isolation on Parkinson’s disease symptoms. The pandemic, and the worldwide social distancing mandates that followed, increased the urgency of their research paper – and the relevance of their findings.

Subramanian, who is the director of a Veterans Affairs Parkinson’s Disease Research, Education and Clinical Centre in Los Angeles, US, became interested in the effect of isolation after learning about the work of psychologist Julianne Holt-Lunstad. Holt-Lunstad found that loneliness can have as detrimental an impact on mortality as smoking up to 15 cigarettes a day – and is also comparable with the negative effects of obesity, physical inactivity and air pollution.

“To define it, loneliness is a subjective feeling about the relationships you want and the perception of what you have – it’s this gap between them,” says Subramanian. “I started thinking about this in relation to Parkinson’s patient population.”

As part of the research study, Subramanian and her team analysed survey results from just over 1,500 people with Parkinson’s disease. The data was gathered in collaboration with Dr Laurie Mischley, associate clinical investigator at Bastyr University Research Institute in Kenmore, US. Participants responded to a series of questions related to social satisfaction and activities, to assess how loneliness impacted symptom severity and quality of life.

The study revealed that individuals who reported being lonely experienced a 55% greater symptom severity than those who were not. Additionally, those who reported having many friends had 21% fewer symptoms than those who reported having few or no friends.

“We were shocked,” says Subramanian. “The research paper shows that isolation contributes to stress, deregulates sleep, causes cognitive issues, and leads to a fixation on negative stimuli and rumination over bad thoughts.”

Addressing the challenges of Covid-19

When Covid-19 lockdowns began, people with Parkinson’s had to stop taking part in exercise classes and other group activities in person. Subramanian says: “There was this urgency to get the message out, and to ask, ‘What can we do about this? How can we keep people connecting?’”

This need for ‘social prescribing’ is exacerbated by the possibility that patients might be unlikely to admit being lonely, says Subramanian. “There’s a stigma around being lonely. Some people feel that loneliness means there’s something wrong with them, that they’re not likeable. So we have to think about proactive questioning, and then help people connect with others in the way they need.”

Subramanian saw an immediate need in Parkinson’s disease community for online support groups – and has since collaborated with Parkinson and Movement Disorder Alliance to help produce regular virtual support sessions for people in need. The sessions covering topics like physical therapy, mindfulness, yoga, and offering support and social involvement to people with Parkinson’s disease, have attracted hundreds of participants from around the world.

Subramanian has also worked with Parkinson’s disease expert Dr Michael Okun to develop the ‘Parkinson’s Secrets Blog’, publishing regular instalments answering common questions, offering tips and seeking to keep members of the community engaged during Covid-19.

Movement disorder neurologist Dr Indu Subramanian.

Combatting isolation beyond the pandemic

The pandemic is not the only cause of loneliness for people with Parkinson’s disease, says Subramanian. “Non-motor symptoms like depression and anxiety can cause people with Parkinson’s to be anxious about going out in public. Some people get this profound lack of motivation; others start to develop motor symptoms that they find embarrassing, or they feel fatigued or mentally out of it for periods of time.

“There’s a host of things that could prevent patients from happily going out and being part of society. The pandemic has just magnified all those things, because people are stuck in their homes, with connecting made all the more difficult.”

But, she says, connecting virtually with the outside world can help to combat social isolation – whether that means, “joining a support group, putting your name on email lists that can connect you with different activities – anything that resonates with you”.

“Right now, people are hungry for some connection,” Subramanian continues, “so it could also be about getting to know your neighbours, or getting out of your comfort zone to pick up the phone and call someone. There are a lot of barriers in your mind that might stop you from reaching out, but there’s the potential for really great connections to be made.”

Find out more about Dr Indu Subramanian’s research into loneliness and Parkinson’s disease.

Find out about Dr Laurie Mischley’s ongoing investigation into complementary treatment.

Read more:

“Helping women with Parkinson’s know they are not alone”

“The lockdown has affected people with Parkinson’s in India immensely”