The director of the VA Southwest Parkinson’s Disease Research, Education, and Clinical Centers offered background the inspiration for the study and why loneliness should be addressed in these patients.
At the 2020 MDS Virtual Congress, September 12–16, 2020, a top abstract presentation was given that revealed insight into the impact of loneliness and social isolation on patients with Parkinson disease. In particular, it covered how these statuses of well-being can extraordinarily detrimental for patients.
Presented by lead author Indu Subramanian, MD, director, VA Southwest Parkinson’s Disease Research, Education, and Clinical Centers, and Department of Neurology, UCLA, the data were analyzed from a survey study of more than 1700 patients with idiopathic Parkinson from the CAM Care PD study. All told, those data showed that those who reported feeling lonely had higher PRO-PD scores—even higher than those for smoking and high stress.
To find out more about how recognizing loneliness as a risk factor for worsened disease severity can lead to more proactive prevention of social isolation, NeurologyLive spoke with Subramanian. She offered some background on what inspired the study and provided her perspective on the need to address loneliness in patients.
Indu Subramanian, MD: I've been a Parkinson's doctor for about 20 years, and I've been really interested in looking at what makes patients have a better quality of life and reduce their symptoms. I have been Western-trained as a movement disorder neurologist, but also have this background in integrative medicine and have been interested in using yoga and mindfulness as applications to possibly help our patients. Going to those conferences about integrative medicine, I learned about these social determinants of health that were really unknown to me from medical school, and I was really fascinated by the concept of loneliness and social isolation.
We ended up having this web survey that we administer to patients. There are about 2000 patients involved in our study, and about 1800 of them or so are patients with Parkinson's. We have a whole host of questions that we asked them about things that they can modify that might have something to do with how their quality of life is currently. Things like exercise and diet. We started looking at some of these other determinants as well, such as loneliness and social isolation, by asking specific questions like, “Are you lonely?” and “Do you have a lot of friends?” things like that. When we looked at the data, I initially was really excited about yoga and its effects. But we ended up looking at the loneliness indicators, and saw that loneliness is actually a hugely bad prognostic indicator for these patients. It's as bad for you to be lonely with Parkinson's as the beneficial effects of exercising 7 days a week for 30 minutes a day is good for you. So, it's a really huge determinant of wellness in this population, and I think it's all the more important to care about this due to COVID-19.
Our research was conducted before the pandemic, and we have a survey that goes out every 6 months, so we'll see how this cohort is doing moving forward—we've added some additional questions around loneliness and ways to measure it. But I think it'll be really important for us as a medical community to care about our patients no matter what the disease state is. There's actually data looking at aging populations and the data suggests that it's as bad for you to be lonely as it is if you smoked a half a pack of cigarettes every day or if you are obese. This is a huge determinant of help just in general populations, and in Parkinson's patients specifically, I think it's really a sort of big red flag if somebody is lonely and isolated.
I think that's probably why somebody like me got interested in some of these other things. I ended up doing a yoga teacher training and did a lot of mindfulness training actually at the VA where I run a Center of Excellence. I've just been drinking it all in, I think it's really important to think about disease and health in a very different way. Even the World Health Organization talks about diseases not just as the absence of wellness, but actually this holistic model of true mental, spiritual, and physical well-being.
The VA has actually been quite cutting edge in that regard. They have this program called the Whole Health Program where the patient's kind of in the middle, and then all the things that make a difference for a patient's health are around them. Things like what they would eat, the people who are in their lives—all these different factors. In a sort of sense that you're not just taking care of Mr. Smith with a tremor today, but really thinking about Mr. Smith and where he lives and all the people that impact him. Can he actually get green vegetables if I prescribe that to him? Can Mr. Smith sign into the online yoga program? I think we have to think about these patients in a very different way.
The COVID-19 pandemic has really made us think outside the box. We're used to seeing a patient in our office with our white coat and the patient sitting in that chair and us typing. Now, I'm seeing them at home, seeing what's in the background. I've really been so interested in the sort of stuff that's in my patients' homes, or what's down the street for them to access, and all the things that make them healthy and well. It's really made me pause and think about what really matters, and I think it's an important time for a lot of these things to be highlighted. People are becoming more open-minded to the concept of health as this sort of holistic kind of approach and thinking about the determinants of health in a very different way. We see that race and ethnicity matter so much to who's dying from COVID-19. We see that something that impacts somebody across the world can impact me like a virus can spread or we can impact each other. It's just such a differently connected way of thinking about health these days that is quite profound as a pivot of change. I'm excited to see what the future holds, but I think we have an opportunity to really think outside that box and intervene in ways that we may never have done before.
One of the things that I've been really interested in is the fact that I've never actually asked about that. You know, if somebody comes into my office with a wife and they seem to be getting along, I just assume that man is not lonely. But from my reading and learning about this, there were a lot of interesting things that were revealed to me. Actually, in order to be not lonely, it's important for you to have quality relationships in 3 spheres.
One is the intimate sort of sphere, maybe being connected to a partner or a spouse. The second is the sort of relational loneliness of having people that are in your circle of friends that care about you, and that you can confide in. The third is that you're connected to a collective group in society that has a purpose that you share. For my veterans, that might be being a veteran. For my Parkinson's patients, it might be joining a support group. These things each actually have to be quite fulfilling for people to not feel lonely, and so I think we have to ask patients in a different way. We have to say, “How are you doing?” and “Are you lonely?” We have to ask, “Do you have people in these 3 spheres?” I think it's quite powerful to care about patients this way. It’s a very different way than we may have done in the past.
Transcript edited for clarity. For more coverage of MDS 2020, click here.