Episode 110: Social Isolation and Loneliness

Dan Keller 0:02

Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller, at the Parkinson's Foundation. We want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research—the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.

Social isolation and loneliness are risk factors for poor health outcomes and mortality. Possible contributors to social isolation are mobility problems, diminished hearing or vision, anxiety, depression, apathy, fatigue, and the loss of loved ones. They occur in the general population and can particularly affect people with Parkinson's. However, not much research has been done in this area, prompting Dr. Indu Subramanian of the West Los Angeles Veterans Affairs Medical Center to conduct a survey among people with Parkinson's disease to investigate the association of social isolation with symptom severity and quality of life. She performed the survey prior to the COVID-19 pandemic, which made social isolation somewhat of the norm for many of us. In this episode, she discusses the findings of the survey and offers some ways that people may become more socially engaged.

Dr. Indu Subramanian 1:49

We looked at things that were beneficial for these patients in terms of their quality of life, and then we looked at things that were detrimental. We noticed that actually, loneliness was very detrimental to their health. The types of things that were positive included exercise. The loneliness factor in these patients was so significant that it was as bad for patients to be lonely as the beneficial effects of exercising seven days a week for 30 minutes a day was good for them.

Dan Keller 2:15

Do social isolation and loneliness affect people with Parkinson's in particular, or more severely than other people of similar ages?

Dr. Indu Subramanian 2:25

Yeah, so I think the Parkinson's population is specifically at risk for this problem. Many of our patients do have some sense of a stigma with carrying the diagnosis. They have some motor issues, like feeling immobile. Sometimes they may have a tremor that might be embarrassing, or they might be embarrassed by dyskinesia—some of the extra movements that they get—and so they may not go out of the home or be in social circumstances as much as people that are age-matched.

Then you add on the non-motor issues that our Parkinson's patients get, and that is really something that can affect their ability to leave their homes and connect with other people. We have apathy, we have things like depression and anxiety, and we have fatigue. A lot of these things can affect patients and their motivation to get involved in leaving their home and connecting with other people.

Dan Keller 3:16

Loneliness is really a feeling or a perception. So, how do you define loneliness? What domains does it fall into or contribute to it?

Dr. Indu Subramanian 3:26

So, that's a good question. You know, we look at social isolation, which is something that's a little bit more measurable. We can see how many people a person may live around, we might be able to see who they interact with, and you can measure these things. Loneliness is really this subjective feeling, and what I've sort of grown to understand is that there's this sense that you want certain types of relationships, you want certain types of qualities in relationships, and those may be different than the ones that you actually possess. It is this gap between the relationships that you have and the relationships that you want that really defines sort of this lonely feeling.

The other thing that was kind of interesting is that I had always had the perception that if somebody was married—if they were happily married, living in a home with somebody who cared about them—there was no way that they could be lonely, and I didn't have to ask about that. Actually, what I learned through some of the research was that you actually have to have three spheres of connection in order to feel connected to people.

There's a sort of intimate sphere of connection, in which you feel connected to perhaps a spouse. Then there's a second sphere, in which you have friends—a circle of friends that can provide this relational kind of connection. Then there's a third sphere, which is more of a societal sphere where you have a connection of community, maybe through something like a liked purpose or a liked interest. I take care of veterans; a lot of veterans feel connected to the VA and other veterans. Women who are moms might be connected to similar types of people. So, I think everyone has the need to feel connected in these three ways, and one can ask about these things specifically to help understand who may actually be lonely.

Dan Keller 5:02

Why are people with Parkinson's particularly at risk for being lonely?

Dr. Indu Subramanian 5:07

The problem becomes that there's sort of this self-fulfilling prophecy. You have patients who may be already withdrawing from society. Loneliness itself can affect health in general significantly. We know from other research in other areas that loneliness can cause increased morbidity and mortality. It's as bad for you to be lonely as smoking a half a pack of cigarettes a day or being obese.

There's also research that shows that loneliness can affect stress—it increases stress—it can affect sleep cycles, it can affect immunity, and it can affect cognition. The way that it affects cognition is pretty profound. People who are lonely, when you examine them, tend to fixate on more negative stimuli, they tend to ruminate on things over and over, and sometimes they sort of become paranoid if loneliness is left unchecked.

When we think about a Parkinson's patient, we have patients who may at baseline feel disconnected because of what we've talked about. They may have a stigma, and they may have motor and non-motor issues that cause them not to want to connect with other people. Then we add on the effects of loneliness, which can affect their cognition, their sleep, cause them to think bad thoughts, focus on negative stimuli, and increase stress. This can then impact other issues like their motor issues. It can affect their non-motor issues, and then it can become a bad cycle in which patients who are already at risk end up getting worse and worse. They then withdraw more and more, and can really get derailed with some of their mental state, their cognition, their motor function, and non-motor function.

So really, it's a population that's already at risk. We saw this data going into the pandemic, and then we add on the pandemic of COVID-19 with its restrictions on social distancing and sheltering in place, and this has really made us worry about this already at-risk population.

Dan Keller 7:02

You published this study in npj Parkinson's Disease, and you looked at a lot of symptoms, quality of life, and other measures related to isolation and loneliness, but you really didn't have a control group. These were people you were following. Is it possible that it's a case of reverse causality—that some of these symptoms that limit their social interaction are causing the loneliness, as opposed to loneliness causing an exacerbation of symptoms?

Dr. Indu Subramanian 7:32

Yeah, I think that's a really good question. That is one of the downsides of doing this type of survey. We have some data from non-Parkinson's patients on the effects of loneliness, and we see that this is something that can affect various measures of health. This has been seen in animal models, in various types of age groups, isolated medical students in testing situations, and even aging populations. So, we do know that loneliness affects health.

You're absolutely right, though, that we can't tell in the Parkinson's population what is cause and what is effect. We know that these things live together and that they can kind of compound each other. We have a figure in the data that shows information about non-motor symptoms, and it really shows that there are a number of non-motor symptoms that seem to associate with being lonely. These are things that you would predict would also compound the loneliness, so things like fatigue, poor sleep, anxiety, and depression. So we can't really say what's cause and what's effect; we just know that these things live together.

Our conclusions do describe these sorts of issues as possibly compounding variables. But I think we approach the data set from the perspective of what we could proactively do. I think that many of the interventions that we would talk about could actually help both. We are talking about ways that we can keep people engaged through proactive ways in social prescribing, trying to help them connect with people. We're trying to help them keep their wellness strategies in check, so trying to keep them exercising, keeping them doing mind-body approaches, and keeping them doing many of the things that would help their motor and non-motor symptoms anyway.

We're really just trying to increase awareness of this issue with neurologists who are treating Parkinson's patients, and not just neurologists, but really anyone who may be able to impact the day-to-day care of our patients. It might be the clerk who checks my patients in at the front desk at the VA, who might be able to have a chat and try to connect the patient with a resource at the VA.

We actually have a new social prescribing intervention. What they've done is they've taken volunteers who used to physically come into the VA, who were told to stop coming physically into the VA during the pandemic and have been missing their own volunteerism and the benefits from that. They redeployed this volunteer force and have been soliciting new volunteers, which has gone very well, actually. What they're doing is trying to match volunteers with like-minded or like-interested lonely patients, and really having them connect either through digital modalities, such as an iPad, or maybe just old-school phone calls.

Many of our patients are actually at risk for not having technology, or not being technologically savvy. Perhaps they don't have the funds to have good Wi-Fi, a computer, or a smartphone, and really are being left out of the current modalities of telehealth or other proactive strategies to outreach. If you're using a virtual support group, for example, or other things that require being able to operate a computer, you're missing out. So really, this is sort of establishing a very simple strategy for just proactive phone calls to lonely patients. I think we have yet to see what the benefits are, but I am really excited because it can possibly have benefits not just in the patients themselves, but even in the volunteers as well.

Dan Keller 10:53

From what you describe, it sounds like clinicians have to sort of intuit that this person may be lonely, whether it's the person checking them in, a nurse practitioner, or a movement disorder specialist. But are there actually any questionnaires or tools that could reveal this more directly? I guess the ultimate question is, how aware are physicians of the need to detect loneliness?

Dr. Indu Subramanian 11:19

What we know about loneliness is actually that loneliness is a pretty high risk factor in many populations, and especially among veterans, for suicide. So, the VA has actually taken this quite seriously.

You asked about questionnaires; actually, one of the tools is the questionnaire that comes out of UCLA. There's a number of questions—I think it's about a 10-question questionnaire in its totality, maybe 10 to 12—but I think you can take three questions out of that and actually get some yield. We're able to use these three questions to surveil patients, and my hope is to incorporate this possibly into the chart, the medical record, and have patients be identified.

It may not be me as the movement disorder provider with the white coat; it might be their primary care doctor, it might be a social worker, it might be clerks or somebody else that can kind of proactively reach out. But I think it's a very powerful timeframe that we're in, and hopefully, we can take these things a little bit more seriously and put in the resources for care that have probably been needed for a long time.

Dan Keller 12:25

If a person with Parkinson's does feel lonely, what can they do now?

Dr. Indu Subramanian 12:30

Well, I think one of the things we really know is that patients aren't going to come to us and complain about it. That's not something that is part and parcel of something that they would think should be talked about to a neurologist.

The truth is, and I think Dr. Vivek Murthy, who is our current Surgeon General of the United States, has done some amazing work. He wrote a book called Together, and he's really highlighted this with some of his own anecdotes about his own life and his own loneliness through middle school and high school. He discusses the effects of this on himself and talks about loneliness as sort of a societal pandemic, and this was a book that was written even before the current COVID-19 pandemic. It really has shone a light on the problems with expecting people to realize that this is a problem and complain about it, because the truth is that being lonely is associated also with a stigma. You feel that if you don't have people in your life that care about you, or if you don't have these relationships, that probably you didn't deserve these relationships, or maybe there's something unlikable about you, and that's why you're lonely.

A lot of people are embarrassed about this and they may not come forward, so I think we have to normalize this conversation and normalize the sort of attention to this as part of the holistic approach to patients with not just Parkinson's disease but health in general. I would hope that one could think about social connection as a basic nutrient, just like food, water, sunlight, and shelter. I think this is something that we need as human beings, and I think so much of our lives had kind of gone away from this before. The pandemic has been a time when we've been able to reflect a little bit more on how important this is for human functioning.

Dan Keller 14:17

What have we missed, or maybe nothing?

Dr. Indu Subramanian 14:20

Well, I think that we have, again, an opportunity. I've done some talking and I ended up actually getting a TED Talk invite within the VA system to talk about loneliness, because I think people realize that this is something that is necessary to highlight. I mean, I think these things can be very powerful. We're all human, even if I'm wearing a white coat, you know? All of these things can affect me just as they can affect you, as they can affect my patients, and even their caregivers.

I usually end these talks by saying, you know, think about how you can affect change in your own community. Perhaps connect more with your neighbors or connect more with the people who might have been forgotten. If somebody is living up the street who lives alone, and you know they don't have anyone to check in on them, maybe drop them a note, leave your phone number, or have a phone call. Maybe reach out to somebody on your Christmas card list that you've forgotten about since high school. I myself have done some of that during this pandemic time, and I think it's really been an amazing way to connect with people; it has truly been a silver lining.

So I think if you can make a change in your behavior, maybe reach out to somebody proactively, it may save somebody's life. You just never know. It's pretty amazing. Think outside that box.

There are a lot of teenagers around who are possibly helping schedule vaccination appointments for patients right now, individuals who might have come out of the woodwork in their communities. Perhaps we can continue the dialogue by having teenagers check in on the elderly. I know my oldest child is quite connected as the IT help desk support for his grandparents who live in Canada right now. It's part of their weekly check-in with their grandson to get all their devices fixed up, and also he gets to check in on them, so I think it could be a beautiful thing.

Dan Keller 16:01

Well, very good. Thanks for all the practical information. I'm sure it's going to come in useful for both clinicians and people with Parkinson's.

In a publication on the survey, Dr. Subramanian suggested that healthcare providers be aware that some patients may feel lonely even when surrounded by people, sometimes called being "lonely in a crowd". On the other hand, some introverted people may prefer not to have others around them and report no issues with feeling lonely. But for individuals who feel lonely and are unable to influence their social conditions, the situation may be especially stressful.

One new concept is social prescribing, where clinicians recommend community resources or activities to help people find and develop healthy social connections. Such resources may provide home visits or phone calls on a regular basis, or connect people to social programs in the community. These sorts of programs may increase interactions and diminish loneliness for both the recipients of the resources and for anyone volunteering at them—for example, to make the calls.

Resources and programs may include exercise or art classes, volunteer opportunities, self-help groups, and activities such as gardening, cooking, or other hobbies. All these activities in themselves may be beneficial, but more work still needs to be done to see if relieving social isolation slows the progression of Parkinson's.

For more on the subject, search our website at parkinson.org for "loneliness" and for "social isolation". There are also past podcasts titled Mental Health in a Medical Setting, two on mindfulness in PD, and another on tai chi exercise. You can also engage with us weekly through our educational and wellness PD Health at Home programs by visiting parkinson.org/pdhealth.

If you have questions about this topic or anything else having to do with Parkinson's, our information specialists can provide answers in English or Spanish. You can reach them at 1-800-4PD-INFO. News and updates about future events and resources are available by joining our email list at the bottom of our website's homepage.

If you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. If you enjoyed this podcast, be sure to subscribe, rate, and review the series on Apple Podcasts or wherever you get your podcasts.

At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Until then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.

Dr. Indu Subramanian received her medical degree in 1996 from the University of Toronto, Canada. She did her neurology residency and Movement Disorders fellowship training at UCLA. Dr. Subramanian has stayed on at UCLA and is now a Clinical Professor of Neurology. She established the movement disorder clinic at the West Los Angeles Veterans Administration and has assumed the position of the Director of the South West PADRECC (Parkinson Disease Research, Education and Clinical Care) Center of Excellence in Parkinson Disease. She has developed a strong interest in integrative medicine with a special interest in Yoga and Mindfulness. She underwent a 200 hour yoga teacher training and studied mindfulness at the VA with J.G.Serpa and Christian Wolfe through Insight LA. She is designing a yoga teacher training program for yoga instructors who are interested in working with PD patients. Dr. Subramanian recently got board certified in Integrative medicine. She is also passionate about palliative care in Parkinson Disease. She is the host of a virtual support group with world experts in PD and co-edits a blog for PD patients.