The neurologist at Christus St Vincent Health System discussed a recently conducted survey on the effects of social isolation and the need to keep patients with Parkinson disease socially connected.
As the COVID-19 pandemic resulted in social restrictions around the globe, patients with neurodegenerative disorder such as Parkinson disease (PD) began to feel the effects of social isolation. To understand the impact of this, the Parkinson and Movement Disorders Alliance (PMD Alliance) created and dispersed a cross-sectional survey to patients with PD and care partners.
Of 7109 invited participants, 718 responded to the survey, most of whom were patients with the disease (70.6%). Investigators found that decreased social support from outside of the household during the COVID-19 pandemic was significantly associated with increases in sadness/depression and anxiety, compared with maintained levels of social support (P <.0001 for both comparisons). It was also associated with increased burden of several nonmotor symptoms, including decline in memory, problem solving, or communication (P = .0009), new or worsening confusion (P <.0001), and new or worsening delusions (P = .018).
Lead author Neal Hermanowicz, MD, believes understanding social isolation for these patients is critical and needs to be addressed. Hermanowicz, a neurologist at Christus St Vincent Health System, sat down as part of a new NeuroVoices to discuss the analysis, ways to improve social support for patients with PD, and why movement disorder experts should continue to ask questions and engage their patients.
Neal Hermanowicz, MD: The survey was put together by a group of us, some people who were other coauthors on the study. We got together, mostly by email, talking about our thoughts on how the pandemic may be affecting people with a diagnosis of Parkinson disease both in motor and non-motor ways. For Parkinson disease, the diagnosis remains a motor manifestation. Correct or not, it is based on motor manifestations. But we do know that the non-motor problems are often at the top of things that are troubling people and their care partners.
There’s a body of literature that’s been around for a long time, sometimes referred to as social neuroscience, about how loneliness and separation from social connections can have a negative impact on general health in so many ways. All of us have had an idea intuitively for years that socialization, being connected to family, friends, or other social contacts, is good for people with Parkinson disease. Unfortunately, the pandemic created a laboratory for doing an experiment, or checking the outcomes of how pulling back socially would impact people with Parkinson disease.
I’ve been doing this for a little over 30 years, and I’m involved with support organizations and support groups. You have this intuitive sense that it’s a good thing for people to be out and about. We thought this would be an interesting way to learn how this reduced social connectivity is going to have an impact on people with Parkinson, both from their own perception and that of a care partner. I hope the pandemic will one day subside and the pulling back from connections will ease up, then we can use this information moving forward about how to provide optimal care for patients in the future.
For people like me who are providing care, we first need to recognize that this is an important component of optimal care of Parkinson disease. The social connectedness is important. I’ve spent most of my career as a clinical professor of neurology and taught medical students, residents, and fellows. I’m as guilty as anybody in the past for not providing enough emphasis about the importance of maintaining these social connections.
For us in the field, we unfortunately know that some people with Parkinson after the receive their diagnosis or maybe as time goes along, they tend to pull back. Maybe it’s because of the tremor they don’t like, and it comes out in social situations, or their alterations of speech. In any rate, some people with this diagnosis tend to pull back on their social connections and that’s not good. All of us who’ve been doing this for a while have this intuitive sense. Now, we have data from our study showing that this is an important component.
In medical school, residency, and so forth, we spend a lot of time learning about neuroscience, the pathology, and the pharmacology of how we treat Parkinson disease. Certainly, in my experience as a medical student, as an interim resident/fellow, and so forth, my career has focused a lot on that pathology and pharmacology of neurodegenerative diseases like Parkinson disease. Clearly, we’ve been missing the boat. There’s a lot of discussion about exercise in the past few years. That came from basic science research. That has come to reality in the clinic and what we recommend to our patients. There has been inadequate emphasis on getting out to be with people. We know from studies across the world, from the Max Planck Institute, University of Toronto, University College in London, that people who are lonely or lacking those social connections, are more likely to have heart disease, more likely to develop dementia, more likely to die sooner. These are really critical things that don’t have an established place in medical care that should. Hopefully, our study will shed some light on that, and ultimately be a part of change in medicine and neurology for our patients.
We need to ask about that, first and foremost. We need to ask the person with the diagnosis and their care partner, “are you maintaining social connections? Are you still meeting with your friends?” The pandemic has made that harder but moving forward we need to be asking about that. Just as we ask, "How’s your tremor? How are you doing with your balance? Have you had any falls and so forth? Are you having side effects from the medication?" We need to ask about these things and make sure they’re in place. We need to encourage people to get those connections early and underway.
Soon after diagnosis, there are so many opportunities. The PMD Alliance is a great example. It’s really an international organization that connects people worldwide. I’ve done talks for them through Zoom and have got people connecting from England or Australia. The message needs to get out. We need to get people connected early on, maintain those connections, and help them understand that this is as important as their exercise regimen, which is also critical. We have lots of evidence that its good for our brains. One of my colleagues where I used to work in Southern California did rodent studies of exercising rodents and showed that so-called neurotrophic factors which Carl Kaufman referred to as brain fertilize, will increase. This is a good thing when rodents are allowed to run at night like they like to.
We need to have all these components and at least equally emphasize the judicious use of pharmaceuticals. Be careful with these medications and cautiously encourage people to get into an exercise regimen that they will maintain. Rocksteady boxing, which is present everywhere I look in the US, gets people connected with an enthusiastic group. The social connection is there, and they’re also engaged in exercise. We need to make sure people are not just taking their pill 3 times a day, but also getting out and about with their exercise and also with their social connections. That study from Max Planck was quite interesting, where they measured brain volumes of people who don’t have Parkinson disease, but older people who were lonely, and saw reduced gray matter in important parts of the brain; the amygdala, the hippocampus, the cerebellum. There have been numerous reports along the same lines, not just doing quantitative brain measures of what happens when people are lonely, but also looking at their general health. There’s also literature that shows that going to museums, engaging in cultural activities, is good for us. It’s not just that we enjoy it, but it’s good for our health. By the age of 25, people have had a sense of home sickness or heartbreak. These are realities. These are not just something in the air, these are things that affect our health and make us feel not so good. Changing those things can have a huge impact on the wellbeing of people.
Transcript edited for clarity. Click here for more iterations of NeuroVoices.