An Overlooked Factor in Neurologic Disease

This transcript has been edited for clarity.

Kathrin LaFaver, MD: Welcome everyone, to a new Medscape feature on loneliness and neurologic disorders. I have the great pleasure of talking about this important topic today with Dr Indu Subramanian, director of the Parkinson’s Disease Research, Education and Clinical Centers at the West Los Angeles Veterans Association (VA), and a clinical professor at the University of California, Los Angeles. She has done a lot of research and connecting of thought leaders on the topic of social connectedness and loneliness.

Indu Subramanian, MD: Thank you so much for having me, Kathrin.

Defining Loneliness and Its Health Consequences

LaFaver: To set the stage, how would you define loneliness and how would you differentiate it from the social isolation that we all have experienced to some extent over the last couple of years?

Subramanian: That’s a really good question. These terms sometimes get transposed, and I think it’s good to have a sense of a definition.

Social isolation is something that we can actually measure. I can tell you how many people you live with, how many connections you make in your daily life with other people, in your workspace, etc. We can measure these sorts of things.

Loneliness is the sense that people can feel a desire for a different sort of relationship than what they have. It’s really this subjective feeling where they desire certain types of relationships, and there’s a gap between those feelings and the relationships that they actually have. That gap results in the felt sense of loneliness. So it’s really more of a subjective sort of thing, which we can also measure.

LaFaver: Why is loneliness important from the perspective of a physician, of a neurologist? How does loneliness affect health and quality of life in our patients?

Subramanian: Social connection is a basic human need, just like food, water, and shelter. I think we really have done a disservice and didn’t care too much about this until we all became very isolated during the pandemic. It was then that we realized we’re not feeling so well.

There has been a literature for many decades around this. Actually, there’s a well-established statistic that being lonely is worse for you than being obese or smoking half a pack of cigarettes a day in terms of your health outcomes. And this is just in populations in general.

When we look at people as they age, just being lonely can really affect things like cognition and sleep patterns and actually puts you at risk for premature death. It’s really something in general populations that has been known about. In my role at the VA, I take care of veterans. In this population, it puts you at an increased risk for substance abuse, suicide, depression, anxiety.

This is a huge public health crisis and actually was a pandemic even before the COVID-19 pandemic. In surveys of aging populations taken before the pandemic, 30%-40% of geriatric population said that they were lonely. This is something that is very, very common and actually quite stigmatized. We really did not spend very much time as healthcare providers really thinking about and understanding this in the patients that we were seeing.

Unique Considerations in Parkinson’s Disease

LaFaver: You and I are both movement disorder specialists. We take care of many, many patients with Parkinson’s disease. As you’ve already mentioned, the pandemic itself has really taken a toll on memory and cognitive function for many people. There’s even this term, pandemic brain, as an indication that many people are struggling more with memory.

Can you talk a more about the interplay between cognition and loneliness, specifically how it plays out for people with Parkinson’s?

Subramanian: There are some statistics that have been out there for certain populations. However, we’re just gathering statistics now for the pandemic and its effects on the brain itself. We just wrote a book chapter, which is unpublished, about COVID and Parkinson’s disease. It highlighted the general populations around the world with Parkinson’s disease and the types of symptoms that they’re reporting. There’s a much higher incidence rate now of anxiety, depression, and sleep dysfunction in Parkinson’s populations.

There are thousands of patients now being tracked in various cohorts across the world. We as Parkinson’s doctors need to care about this because these sorts of things can affect the nonmotor issues, the mental health issues that are already a huge problem in our patient population.

There’s a number of statistics about the impact of being lonely from a cognitive perspective. I’ve seen statistics that you’re four times more likely to get Alzheimer’s disease if you’re lonely, and cognitive dysfunction is, I believe, around 40% higher in patients who are lonely than in nonlonely cohorts.

We did a study that looked at a number of motor and nonmotor symptoms in Parkinson’s disease, as well as quality-of-life measures. This is actually pre-pandemic data that we’ve been following with about 1500 patients in a longitudinal survey that’s cross-sectional and internet-based. What we saw in that survey that it was as bad for you to be lonely as the beneficial effects of exercising 7 days a week for 30 minutes a day.

We all know that exercise is medicine. So you can imagine the synergistic, negative effects of not exercising, being sedentary, and being socially isolated in populations with neurodegenerative diseases. It’s really a huge, huge problem.

On the flip side of that, we have to ask what we can do about this. I’m always trying to find meaningful ways to think about things in a positive way. We see that if we can engage people in exercise — get them exercising in groups and socially connecting — we can perhaps have a double benefit. We’re always looking for modifiable variables to help our Parkinson’s populations.

From this data, we have ways to encourage people and to screen patients as healthcare providers across the board. It doesn’t have to be the movement neurologists screening. It could be a neurologist, or a physical therapist, or any point of care for Parkinson’s patients. Once we identify those people who are at risk for being isolated, we can try to somehow get them connected.

LaFaver: Coming to back to the screening issue, are there any specific measures or practical tools you’d recommend for someone in neurology practice to use?

Subramanian: These are actually quite simple tools. We did a small survey of the UCLA loneliness questionnaire. There are about 12 questions in the full questionnaire. There’s a modified questionnaire that’s eight questions, and then a three-question version. We tried to see what the most high-yield question in our population was. Pretty much all of the questions were validated in Parkinson’s disease. But something like, “Do you often or sometimes feel isolated,” is a question that’s actually probably the most high yield.

I think that’s something simple that we can ask to anyone in in our encounters and then kind of take it from there.

A Three-Sphere Approach to Treating Loneliness

LaFaver: To bring our conversation to an end on a high note, what are some more measures we can take or resources we can offer patients to help combat loneliness?

Subramanian: One of the things that I’ve found in doing research in this area is something I honestly had no idea about previously. That’s because we don’t spend any time talking about this really in medical school or in our residency training. However, since then, we as clinicians have realized how important social connection is with each other.

But what I found was that in order to feel connected or not lonely, there’s actually three spheres of connection. One is this intimate sphere, where you have a person in your home that lives with you that you can connect with. That might be your spouse or your child.

But actually, that’s not enough. We need two other spheres to be connected. One is a friend circle outside of the home. That’s a relational sphere of some friends that you can talk to, maybe even about your home environment and things like that.

And then there’s a third sort of collective sphere of connection in which we need to be connected, maybe in society, to something with greater purpose or meaning that we share with these other people. For some people, it might be a support group, like a Parkinson’s support group. For some of my patients at the VA, it might be a veterans’ organization. Or it could be birdwatching, social justice, or a religious organization. There may be a number of things that can fit these spheres.

What’s important, number one, to realize is that you may be encountering patients that are married; they seem happily married and have that intimate sphere met but don’t have these other sorts of connections. So it’s important to encourage people to think outside the home and understand that you can be a perfectly happy married couple, and that couple can actually be lonely together. That is something that’s very key when we’re thinking about this.

I love the concept of social prescribing. What that is, basically, is me as a neurologist writing a prescription to connect a patient socially to some sort of support system. In the United Kingdom, they’ve done some research on this and have been thinking about this in the National Health Service. They have this concept of a link worker, who’s somebody in the community that I, as a physician, can engage to help the patient who may be isolated and to find resources in that community. I’d love to see more of that happening. We’re starting to see some of that with online support groups and trying to reach out to folks.

It’s important, when we’re doing this work, to also realize that there is a digital divide. Many people can connect through online resources, but what are we doing for the people that are isolated without internet or without computer-tech savviness? We need to find ways, through phone calls and things like that, to engage these patients.

We have shown that there’s value to even a simple phone call, a simple video sort of interaction once a day for patients trying to get dressed and leave their home every day. These are sorts of simple things that we can start to drizzle in that can actually make a difference for these social connections.

LaFaver: Wonderful. Thanks for highlighting social prescriptions. I’m also a big fan of that and I know the United Kingdom has been really spearheading that concept. I’ve also seen it used in child psychology, things like encouraging people to go outside, to have children play outside, and this whole concept of connecting to nature.

There are multiple spheres interacting in this concept and lots of room for creativity. Hopefully, as we’re coming out of this pandemic, there are new ideas around connecting people. I think that’s very important.

It was great talking to you today about the topic of loneliness and specifically Parkinson’s disease. Hopefully, this will inspire people to get active and ask and help our patients dealing with this. Thank you so much.

Subramanian: Thank you, Kathrin.

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