Abuse and neglect of people with multiple sclerosis: A survey with the North American Research Committee on Multiple Sclerosis (NARCOMS)

Background: An estimated 100,000 Americans with advanced multiple sclerosis (MS) are at risk of mistreatment, yet we lack national prevalence data on abuse and neglect. Our objective was to determine the incidence and prevalence of caregiver abuse and neglect among U.S. adults with advanced MS.

Methods: Through an anonymous telephone survey with the North American Research Committee on Multiple Sclerosis (NARCOMS), we administered the validated Scale to Report Emotional Stress Signs - Multiple Sclerosis (STRESS-MS) and other study measures to 206 U.S. adults who had unpaid caregivers because of MS-related disability.

Results: 54.9% of respondents disclosed undergoing some form of mistreatment since first requiring caregiving by a family member or friend, including psychological abuse (44.2%), financial abuse (25.2%), neglect (16.5%), physical abuse (11.2%) or sexual abuse (8.3%). Many had experienced multiple forms of mistreatment. Mistreated respondents reported less social support, more alcohol use, and higher levels of fatigue and cognitive impairment. Daily caregiving increased mistreatment risk. Caregivers with mental illness were 13 times more likely to be abusive or neglectful. Poor premorbid relationships with caregivers nearly tripled mistreatment risk, while any significant alcohol use history by people with MS or caregivers doubled risk.

Conclusions: In a nationwide survey, over 50% of American adults with advanced MS reported mistreatment by caregivers.