News ID: 276025
Published: 0547 GMT October 28, 2020

More than half of American adults with advanced MS report mistreatment by caregivers

More than half of American adults with advanced MS report mistreatment by caregivers
medicalexpress.com

Four in 10 people with advanced multiple sclerosis, or MS, in the US are emotionally abused by someone responsible for caring for them, reports a study led by the University of California, Riverside.

Further, the study finds one quarter are financially exploited, one in six are neglected, one in nine are battered, and one in 12 are sexually assaulted by a caregiver, eurekalert.org reported.

"We knew we would find some level of abuse and neglect, but we were surprised by how prevalent it is," said Dr. Elizabeth Morrison-Banks, a health sciences clinical professor at the UC Riverside School of Medicine, who led the study. "The findings of this study represent a collective cry for help from so many families affected by multiple sclerosis across the United States."

MS is an autoimmune disease that affects more than 2.3 million people worldwide. This chronic, degenerative neurological condition periodically shutters communication between the brain and other parts of the body, resulting in symptoms that include numbness and tingling in the arms and legs, as well as blindness and paralysis.

"MS affects people in different ways," Morrison-Banks said. "Some people live with MS for many years but with milder symptoms, and they may remain completely self-sufficient and never require a caregiver. Others are less fortunate and develop neurological disability that can make them vulnerable to abuse and neglect if they are unable to move around independently, take care of their own finances, or get away from the situation when family conflict escalates. These problems are compounded if the person with MS and family lack financial resources."

Morrison-Banks explained that for families who are struggling economically, relying on a paid caregiver is often not an option, and family caregivers have to step in to fill the breach.

"Some family caregivers are also working full time, caring for children or other family members, and sometimes dealing with health issues of their own," she said. "All of these challenges can increase risk of mistreatment. I want to emphasize that the majority of family caregivers do not mistreat those they care for, even in situations that can be very challenging. Nonetheless, it is important to recognize the risk factors for mistreatment of people with disabilities, and do what we can to identify, mitigate, and prevent abuse and neglect."

Study results appear in Multiple Sclerosis and Related Disorders. According to Morrison-Banks and her colleagues, the research paper is the first published survey documenting the nature and extent of caregiver mistreatment of adults with MS in the United States. The research team collaborated with the North American Research Committee on Multiple Sclerosis to conduct a telephone survey of 206 American adults with advanced MS living across the United States.

The preliminary study found nearly 55% of respondents disclosed undergoing some form of mistreatment since they started receiving care from a family member or friend.

The researchers do not fully understand all the risk factors for mistreatment. Their anonymous telephone survey did find, however, that family members who had to be the primary caregiver every day, day in and day out, were at higher risk of mistreating the person with MS. Other risk factors included the person with MS having higher levels of cognitive impairment or fatigue, the caregiver having a mental health diagnosis, and lower levels of social support within the family.

   
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