By Pat Anson, PNN Editor

People with multiple sclerosis already have enough problems living with a progressive disease and sky-high medical bills. But now there’s word that many of them are being abused by their own caregivers.   

Researchers at the University of California, Riverside surveyed 206 patients with advanced MS and found that over half of them were being abused in some way by an unpaid caregiver who was often a member of their own family. The mistreatment ranged from psychological (44%) and financial abuse (25%) to neglect (16.5%) and physical abuse (11%). Over 8 percent of patients said they were abused sexually.   

"We knew we would find some level of abuse and neglect, but we were surprised by how prevalent it is," said Elizabeth Morrison-Banks, MD, 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 a chronic and disabling autoimmune disease that attacks the body’s central nervous system, causing pain, numbness, difficulty walking, paralysis, loss of vision and fatigue.

"Some people live with MS for many years but with milder symptoms, and they may remain completely self-sufficient and never require a caregiver,” Morrison-Banks explained. “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."

A recent study found over 75% of American adults with MS face financial hardship that has forced them to cut spending on food, clothing and housing. Many have gone into debt or filed for bankruptcy, and over a third have delayed or stopped filling prescriptions because they can’t afford them. The average cost of disease-modifying MS drugs is about $76,000 a year.

For MS patients who are struggling financially, hiring a professional caregiver is not an option, so many have to rely on family caregivers.

"Some family caregivers are also working full time, caring for children or other family members, and sometimes dealing with health issues of their own," explained Morrison-Banks. "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."

Other risk factors for mistreatment include MS patients with higher levels of cognitive impairment, caregivers having a mental health problem, alcohol use by the caregiver or patient, and low levels of social support within the family.

"Being a full-time family caregiver for someone with substantial neurological disability often presents significant challenges," Morrison-Banks said. "Many families take these challenges in stride, but others end up in situations of abuse and/or neglect."

The survey findings have been published in the journal Multiple Sclerosis and Related Disorders. The research paper is believed to be the first to document the nature and extent of caregiver mistreatment of MS patients in the United States.

The survey did not include patients who had paid caregivers or trained clinicians. A study of paid caregivers is an important next step for the research team. The National Multiple Sclerosis Society funded the UC Riverside study.