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Survey of People with MS Shows Significant Abuse by Carepartners: Resources for Support Are Available

October 26, 2020

A survey of 206 people with MS who had carepartners who were unpaid family members or friends suggested that more than half of respondents reported some form of psychological, physical, or other kinds of abuse.
  • Even though abuse is a topic that no one likes to read or think about, it can happen in any relationship — personal or professional — even in the most loving of families. Data are necessary to understand the full scope of this issue and related factors, so that it can be stopped and prevented.
  • The researchers administered a telephone survey to 206 people with MS who had carepartners who were unpaid family members or friends. The group was recruited from the NARCOMS registry of people living with MS.
  • More than half of respondents (54.6%) reported some form of abuse: psychological (44.2%), financial (25.2%), neglect (16.5%), physical (11.2%) or sexual (8.3%).  Those who reported abuse also reported having less social support, more alcohol use, and more fatigue and cognitive impairment. If the carepartner had mental illness, abuse was much more likely to occur. Any significant history of alcohol use by either the person with MS or the carepartner doubled the risk that abuse would occur.
  • Learn about preventing abuse.
  • The results show the importance of emotional well being.
    • Get tips on how carepartners can get the respite and support that they need.
    • Get help for alcohol problems here.
  • Sign up with NARCOMS and iConquerMS to share your voice in research efforts. 
  • Read more, from the University of California, Riverside
“Abuse and neglect of people with multiple sclerosis: A survey with the North American Research Committee on Multiple Sclerosis (NARCOMS)” by Elizabeth H. Morrison, MD (University of California, Riverside), Napatkamon Ayutyanont (Hospital Corporation of America), and colleagues was published in MS and Related Disorders (online September 24, 2020).

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system. Symptoms range from numbness and tingling to blindness and paralysis, and there is currently no cure for MS. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. An estimated 1 million people live with MS in the United States. Most people with MS are diagnosed between the ages of 20 and 50, and it affects women three times more than men.


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