Article In Brief
Patients with Parkinson's disease who were socially isolated rated their Parkinson's disease on outcomes scales as more severe and their quality of life as lower than non-isolated PD patients. The COVID-19 pandemic has only exacerbated the deleterious effects on health and quality of life associated with social isolation.
Loneliness, Parkinson's disease (PD), and COVID-19 have all been described as pandemics, each with deleterious effects on health and quality of life. For some patients with PD, COVID-19 is just one of the three pandemics they are currently living through.
When Indu Subramanian, MD, director of the Veterans Administration (VA) Southwest Parkinson's Disease Research, Education, and Clinical Center, attended an integrative medicine conference a few years ago, she was struck by the findings of a presentation that found that in general aging populations, “loneliness is as bad for you as smoking half a pack of cigarettes a day or being obese.”
She realized then that there were no studies looking specifically at loneliness in PD. “It just seemed like such an important area because so many of our patients are aging and living alone. I thought it was something that needed to be looked at,” said Dr. Subramanian, who is also board-certified in integrative medicine.
Since 2013, she had been working with her colleague Laurie K. Mischley, ND, PhD, MPH, on the Complementary and Alternative Medicine in PD (CAM Care PD) study, a prospective, observational, web-based study to explore the association between modifiable lifestyle variables and self-reported PD symptoms. A few years ago, they added questions about loneliness into the analysis.
Their paper, published online October 8 in npj Parkinson's Disease, found that among the 1,527 PD patients surveyed, those who were socially isolated rated their disease as more severe and their quality of life as lower than non-isolated PD patients.
Loneliness as a Determinant of Quality of Life
“When we looked at the PD population, the take-home is that loneliness really is a key determinant of how people do in terms of their quality of life. And that it is something that is as bad for you as some of the most positive variables—such as exercising every week for 30 minutes a day—are good for you,” Dr. Subramanian said.
“The worry was that with COVID-19, people were getting more derailed with social interaction because they weren't attending their exercise groups and support groups, which had been keeping them connected and active in the past. We knew this could be a really risky time for our patients with Parkinson's. But in the same vein, if we were able to keep people connected and exercising in some modalities, it could actually be a double positive. So that was exciting.”
The paper used Patient-Reported Outcomes in PD (PRO-PD) and questions from PROMIS Global related to social health to measure patient responses. “Individuals who reported being lonely experienced a 55 percent greater symptom severity than those who were not lonely (p<0.01). Individuals who documented having a lot of friends had 21 percent fewer symptoms than those with few or no friends (p<0.01),” Dr. Subramanian and colleagues wrote. Although causation could not be determined due to the nature of the findings, there could still be important implications for neurologists.
“We, as doctors, see whoever shows up in front of us. Maybe we see an older male vet with their wife, and we assume they're connected, and we don't have to ask these questions. But what we've learned is that a person can be happily married and still be disconnected. If you don't have a circle of friends or somebody outside of that partner/intimate marriage to confide in, it can be a problem.”
She added that individuals also need a third sphere of connection beyond friendship and intimate relationships, which is being part of a larger community—this could be the PD community or the veteran community, for example.
The Need for ‘Social Prescribing’
Dr. Subramanian suggested, “social prescribing”—the practice of having clinicians prescribe resources or activities in the community (in-person or virtual) to help patients with social connection—could be the way forward. There's a huge stigma around loneliness, she said, because people think it reflects poorly on them and their likability.
“I think society created situations where people are so disconnected, and I think the pandemic is fueling this more. We as doctors really have to think about connection as a vital human need, like food or water or medication, for a PD patient. We can proactively ask about it, knowing that there is a stigma, knowing that people are not going to proactively come to us.”
At the VA, Dr. Subramanian said she has been working with a social prescribing program called Compassionate Contact Corps. The program pairs volunteers, who used to come in-person to help out at the VA and often have a deep personal connection to veterans, with veterans who are lonely; they connect once a week through a video or phone call.
Additionally, Dr. Subramanian started a popular virtual support group with the Parkinson & Movement Disorder Alliance, which has been active since the beginning of the pandemic and brings new speakers to discuss PD-related topics every week while attendees can chime in via the chat feature (https://www.pmdalliance.org/social-distancing-coronavirus/).
Important Questions for Clinicians
In a population already at risk for isolation and loneliness, PD specialists have seen firsthand the substantial toll the pandemic is taking on patients and caregivers.
The study by Dr. Subramanian and colleagues, “although cross-sectional and conducted before the pandemic, found a strong and significant correlation between worse disease and social isolation,” said Jori Fleisher, MD, MSCE, Leslie Nan Burridge Endowed Faculty Scholar in Parkinson's Disease and associate professor of neurological sciences at Rush University Medical Center in Chicago.
The findings raise important questions: Are these patients socially isolated and lonely because their disease is so severe? Or did they become isolated and experience loneliness because they were disconnected from a lot of the opportunities described within social prescribing—volunteering, exercise classes, community engagement? And because they're not getting out or being positively stimulated, is this making the disease progress faster?
“To my knowledge, this is really the first study to look at social isolation and loneliness in a rigorous way in Parkinson's, and I'm so glad that it came out now because we need to recognize this—especially in light of the pandemic,” Dr. Fleisher said.
PD, Anxieties, and COVID-19
PD patients suffer from three types of anxieties, Joseph H. Friedman, MD, FAAN, Stanley Aronson Chair in Neurodegenerative Disorders and director of the movement disorders program at Butler Hospital in Providence, RI, said: generalized anxiety, social anxiety, and panic disorder. “The pandemic reinforces the social anxiety and makes it much more difficult to overcome. PD patients are often apathetic—so apathetic that sometimes the only pleasure they get is from seeing their grandchildren, and the pandemic usually comes between them and their one source of pleasure,” which can increase their feelings of isolation.
Since the pandemic began, Dr. Fleisher has noticed that, particularly in PD patients who already had anxiety, depression, delusion, and hallucinations, these have gotten so much worse—and the volume of calls and messages from patients and caregivers about these issues is much higher.
“I think it is both the isolation and loneliness, as well as fear of what the pandemic means and fear of getting COVID or family getting COVID. There's also a significant contribution from what happens when people are at home and can't go out, so they turn on the TV, and the 24-hour news cycle makes things even worse,” she said.
Andrew P. Duker, MD, clinical director of the movement disorders division and co-program director of the movement disorders fellowship at University of Cincinnati Gardner Neuroscience Institute, said, “At our center, we've seen a significant increase in social isolation, anxiety, and depression in our patients with PD. It seems to be most evident in patients living in care facilities, where restrictions on access have greatly curtailed visits from family and friends.”
Just this month, he said patients told him the clinic visit was their first time leaving their facility since the pandemic started.
“Video visits with patients in nursing homes have been particularly challenging, as I don't think I truly appreciated the value of the information provided by family members that now see their family member much less frequently, if at all.”
When possible, they try to arrange three-way video visits so the family or care partners can join. Even patients not in long-term care or nursing home facilities have reported being afraid to leave their house and feeling anxious about COVID. “This increase in anxiety leads to reduction in the patient's quality of life, and often exacerbation of their other Parkinson symptoms,” he said.
Marie-Helene Saint-Hilaire, MD, FRCPC, FAAN, medical director of the Parkinson's Disease and Movement Disorders Center and professor of neurology at Boston University (BU) School of Medicine, has found that “patients are really thirsty for contact even with their doctor. So they call a lot more often. We've had a lot more telemedicine visits than we would have in normal times when we'd see them in person.”
She added that it's not only patients with PD who are feeling isolated, but their caregivers are suffering just as much. There is no downtime for them anymore, with most in-person activities off limits, so the caregiver does not have the chance to engage with their own social connectivity.
Screening for Loneliness, Prescribing Solutions
Prior to COVID-19, Dr. Duker said they did not routinely ask PD patients about social connections, but now they begin screening by making these questions part of the visit. “I have been directly encouraging patients at each visit to increase their social connectivity, by communicating with family and friends by phone or ideally a video call, by participating in a support group and video exercise programs set up by Parkinson's specialists in our area and emphasizing the importance of these links for their health. We developed a handout with online resources that we provide to our patients,” Dr. Duker said.
Dr. Fleisher said her interdisciplinary palliative clinic for people with advanced movement disorders has incorporated a three-item loneliness scale into the screening at every visit. “The questions are simple, but it's more about taking that moment to actually make eye contact—even if it's on video—with the patient and the care partners to ask, ‘How are you? No, really?’ and to provide the space and time for them to say more than just, ‘I'm okay. I'm hanging in.’”
In Boston, they have developed a number of web-based programs focused on the well-being and mental health of people who have been diagnosed with PD and their caregivers. They are also working with BU medical school students to pair them with patients with PD to reduce isolation. “They meet throughout the fall for a few hours on a weekend, and they don't talk about anything medical—only about hobbies and interests,” Dr. Saint-Hilaire said.
This pandemic will fundamentally shift health care and social connections in so many ways, Dr. Fleisher said. “How do we come out of this stronger? I think this social prescribing paradigm highlights the importance of social workers, community health workers, and mental health care professionals. Neurologists need to know about these areas, but they don't need to be the experts because we have colleagues who are.”
For neurologists taking care of people with PD and related disorders, she added, “know that there are tremendous resources online, asynchronous classes and webinars that people can watch on their own time, virtual support groups, fitness classes. So many of these things are archived so they can join live or they can join after the fact, but to know that they're not alone, to know that there are resources out there, I think that's one of the best gifts that we can give our patients. That's one of the best ways that we can help them right now.”
For those patients who have difficulty with or distrust technology, she said she strongly encourages family members to pick up the phone, write letters or postcards, send photo albums—anything to remind them that they are not alone.
The CAM Care PD study was initiated with a grant provided by National Institutes of Health award. npj Parkinson's Disease is published in partnership with the Parkinson's Foundation.