NeuroVoices: Tiffany Malone, MSW, MSCS, on Combating Loneliness in MS Care Through Connection and Community Programs

Tiffany Malone, MSW, MSCS

(Credit: Dignity Health)

Studies have shown that loneliness and social isolation can be a significant psychosocial challenge for patients living with multiple sclerosis (MS). Recent research has revealed that social isolation could be associated with lower quality of life and greater perceived disability among individuals with MS, independent of disease severity or progression.^1,2 Contributing factors of feelings of loneliness and social isolation could include mobility limitations, employment changes, stigma, and disruptions in social roles, which can accumulate throughout the course of the disease.

Moreover, recent study findings suggest that addressing loneliness in MS care may offer measurable benefits for patients. In recently published studies, researchers reported that greater perceived social support may be significantly associated with improved mental health and reduced fatigue over time.² These data underscored the impact of integrating social and emotional well-being into routine MS management. Thus, interventions such as group-based wellness programs, peer support networks, and clinician-initiated conversations about daily engagement may help mitigate these risks and improve patient-centered outcomes.

At the 2025 Consortium of Multiple Sclerosis Centers (CMSC) Annual Meeting, held May 28-31, 2025, in Phoenix, Arizona,Tiffany Malone, MSW, MSCS, presented a talk that highlighted the widespread epidemic of loneliness and its amplified effect on patients with MS.³ In a new iteration of NeuroVoices, Malone, director of the John A. Schafer, MD Multiple Sclerosis Achievement Center at Dignity Health, emphasized that clinicians can identify and address isolation through simple, meaningful questions that explore patient engagement and joy. She also shared the success of a day wellness program that fostered social connection, empowerment, and adaptive participation in the community, helping to reduce the psychosocial burden of MS.

NeurologyLive: How do you see loneliness and social isolation initially impacting clinical outcomes for patients living with MS?

Tiffany Malone, MSW, MSCS: Well, let me answer that question in 2 parts. The first part is that there is an epidemic of isolation and loneliness in the United States, and that came from a report released by the U.S. Surgeon General's advisory back in 2023. So, this is not just a problem for people living with MS, but for the general population in our country.

There are lots of risk factors that put a person at higher risk for isolation and loneliness, and certainly, MS is one of them. As clinicians, as healthcare providers, we know that a person living with MS has experienced quite a bit throughout their diagnosis journey—experiences of isolation, loss, changes in employment, loss of employment, changes in function, changes in relationships.

The impact of loneliness and social isolation is extreme. It's very significant. There are a lot of health conditions that can come from that—increased risk for heart disease and stroke, diabetes, dementia—the list goes on. So, we really want, as healthcare providers in this community, in the MS community, to be aware of that. There is an epidemic, but we also need to try and incorporate that into our practice however we can.

I know that healthcare providers, in a 20- or 30-minute appointment with their patient, are not going to be able to address all of this, but we can find out how engaged patients are, how engaged they feel. The report revealed that only 39% of Americans felt very connected to someone else. That’s a really low number for our population, and that’scary from a healthcare perspective. We need to look at ways to connect patients, provide education, offer engagement opportunities, and find out how they’re feeling—even with the changes that MS has brought to their lives.

What role can clinicians play in identifying and addressing isolation in their patients with MS?

I think asking very specific but very simple questions, like: What do you do that you enjoy? How do you spend your day? What does your week look like? We can learn a lot about a patient, especially in a very short amount of time, with a simple question like: What do you do for fun? What brings you joy? If they answer that there's nothing, then we can explore that further and maybe provide some resources or connect them with someone else who can spend more time diving into what that looks like and how they can help. Instead of always asking, “How far can you walk?” or “What’s your level of pain or fatigue?”, we should also ask, “What do you do that brings you joy in your life?” We can learn a lot from a question like that.

Can you describe any interventions, clinical or community-based, that have shown promise in reducing isolation among individuals with MS?

The MS Achievement Center, which is named after our founder, John Shaffer, PhD, is a day wellness program. Our members come once per week. We’ve reported some patient-reported outcomes over several years that indicate that a day wellness program—bringing people with the same diagnosis together—is very impactful.

What we've heard since day on—and we’re just over 11 years old now—is that the day they come to the program is their favorite day of the week. Oftentimes, they’re unemployed or retired because of their diagnosis. They’ve lost many of the relationships they had before the diagnosis—just a lot, a great deal of loss. But coming to the center, where they can be around people who know what MS is and where they don’t have to explain themselves, is a safe and secure community and place for them.

We also educate them on what they can do. Yes, there’s a whole list of things that have changed—things they perhaps can’t do anymore, or that they have to do differently—but we really try to focus on what they can do.

Not only do we provide a structured program with education, physical activity, cognitive activities, socialization, and emotional support, but we also bring them out into the community. We give them opportunities to say, “Yes, I’m living with MS. I might be using a mobility device or a wheelchair, but I can still go adaptive kayaking. I can still explore nature. I can still go swimming or be in an aquatics program.”

We really try to introduce different activities to them that they may have never thought they could do again. And even if it’s not something they want to continue doing, they at least learn that the opportunity is there.

I remember a few years ago, we offered a paint workshop at our program, and I had a member say, “I’ve never painted before. I’m not a painter. I’m not sure I’m even interested.” But she came, and she fell in love with it. She said, “I would have never experienced this had I not been diagnosed with MS and been here for this opportunity.”

Transcript edited for clarity. Click here for more coverage of CMSC 2025.

REFERENCES
1. Ochoa-Morales A, Hernández-Mojica T, Paz-Rodríguez F, et al. Quality of life in patients with multiple sclerosis and its association with depressive symptoms and physical disability. Mult Scler Relat Disord. 2019;36:101386. doi:10.1016/j.msard.2019.101386
2. Khatooni M, Dehghankar L, Bahrami M, Panahi R, Hajnasiri H. Perceived Social Isolation Among Patients With Multiple Sclerosis Suffering From Disease-Induced Pain and Disability. J Nurs Res. 2024;32(4):e341. Published 2024 Aug 1. doi:10.1097/jnr.0000000000000624
3. Aghaei N, Karbandi S, Gorji MA, Golkhatmi MB, Alizadeh B. Social Support in Relation to Fatigue Symptoms Among Patients with Multiple Sclerosis. Indian J Palliat Care. 2016;22(2):163-167. doi:10.4103/0973-1075.179610
4. Malone T. Connection to Combat Loneliness and Isolation. Presented at: 2025 CMSC Annual Meeting; May 28-31; Phoenix, AZ. The Benefits of Day Programs as Part of Comprehensive Care for People Living With MS.