People Living with ALS and Caregivers Want More Social Interaction, ALS Focus™ Survey Finds

Results will guide the development of initiatives designed to reduce isolation and loneliness within the ALS community

ARLINGTON, Va., Nov. 3, 2025 /PRNewswire/ -- A new survey of more than 1,000 people living with ALS and caregivers reveals that more than half of participants are experiencing isolation, with 36% reporting less than one hour of social interaction per day—a level associated with diminished well-being in related studies. These results underscore the need to develop interventions that support meaningful social connection for people affected by ALS.

The survey, conducted as part of the ALS Association's ALS Focus™ Survey Program, provides insight into social interaction patterns, preferences, and barriers within the ALS community. The results serve as a much-needed window into the lived experiences of people with ALS and current and surviving caregivers at a time when loneliness in America has reached epidemic levels.¹

"The harms of loneliness on emotional and physical health are well documented in the general population and even in some key subgroups, but not in ALS," said Sarah Parvanta, Ph.D., MPH, senior director of mission informatics at the ALS Association. "The results of this ALS Focus survey are a data-driven snapshot of what has likely been the reality for many people in our community for a long time. Our next step is to turn this research into action."

According to the survey:

• 52% of participants report experiencing loneliness.
• 36% have less than one hour of social interaction per day.
• 48% want more social interaction than they currently have.
• Major barriers to interaction include fatigue, speech, and mobility challenges for those with ALS, and worry, guilt, and time constraints for caregivers.

Current caregivers were particularly impacted by isolation, with nearly half (47%) reporting less than one hour of social interaction per day.

While the quantity of social interaction was of particular interest, the survey also asked participants about the quality of their interactions. Overall, about one in three survey participants (35%) felt their social interactions were not positive or meaningful most of the time.

"Connection is not just about proximity—it's about feeling seen, heard, and valued in those interactions," Dr. Parvanta added. "The data tell us that many people in our community are missing that. Our goal now is to increase the number of people living with ALS and caregivers engaging in at least one hour of positive social interaction each day."

Results from this survey will help guide additional community discussions about social isolation and loneliness for those living with ALS and their caregivers and inform the development of interventions and programs to increase social connection.

About the ALS Association 
The ALS Association is the largest ALS organization in the world. The ALS Association funds global research collaborations, assists people with ALS and their families through its nationwide network of care and certified clinical care centers, and advocates for better public policies for people with ALS. The ALS Association is working to make ALS a livable disease while urgently searching for new treatments and a cure. For more information about the ALS Association, visit our website at www.als.org.

About ALS Focus^™
ALS Focus is one of the largest community-driven ALS survey research studies in the world. Through twice yearly ALS Focus surveys, the ALS Association scientifically measures the preferences, needs, and experiences of people living with ALS in the United States and their caregivers to inform strategies that will enhance research, care, and advocacy. All responses to ALS Focus surveys are de-identified and shared free of charge with researchers around the world. For more information about ALS Focus, visit alsfocus.org.

¹ https://www.hhs.gov/sites/default/files/surgeon-general-social-connection-advisory.pdf

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SOURCE The ALS Association