In a nationwide survey of adults with advanced multiple sclerosis (MS), more than half reported being mistreated by their caregiver. It is believed to be the first published survey to document the nature and extent of caregiver mistreatment of adults severely disabled by MS.
The survey results showed that about 4 in 10 respondents said they were emotionally abused by someone responsible for caring for them. About one quarter were financially exploited; 1 in 6 were neglected; 1 in 9 were battered; and 1 in 12 were sexually assaulted by a caregiver.
The findings are particularly relevant during the COVID-19 pandemic. One of many "unfortunate realities of the pandemic is that domestic violence is on the rise in the general population," Elizabeth Morrison-Banks, MD, who led the study, told Medscape Medical News.
"Between stay-at-home orders, school closures, social unrest, and economic uncertainty, families across the US are under a great deal of added psychosocial stress this year. Add advanced MS on top of that and we may be looking at a perfect storm of mistreatment risk factors," said Morrison-Banks, director of the MS program at the University of California, Riverside.
Results of the survey were published in the November issue of Multiple Sclerosis and Related Disorders.
Suffering in Silence
The researchers collaborated with the North American Research Committee on Multiple Sclerosis to conduct an anonymous telephone survey of 206 adults (mean age, 59 years; 74% women) living with advanced MS.
Nearly 55% of respondents said they had suffered at least one form of mistreatment since they started receiving care from an unpaid caregiver, such as a family member or friend. Psychological abuse (44.2%) was most common, followed by financial abuse (25.2%), neglect (16.5%), physical abuse (11.2%), and sexual abuse (8.3%).
Caregivers with mental illness were 13 times more likely to be abusive or neglectful.
The risk for mistreatment was increased among MS patients who needed daily care from a family member or friend. Having a poor relationship with a caregiver prior to needing their help nearly tripled the risk of being mistreated.
"Mistreatment is an inherently difficult topic for people to talk about in our society, and it often goes unnoticed until the clinician brings up the topic," Morrison-Banks told Medscape Medical News.
"The more clinicians' awareness level is raised that their patients/clients with MS are at risk of abuse, the more prepared they will be to ask questions when they start to suspect something is going wrong in a patient's home," she said.
"Clinicians who do identify a problem can then refer the family for support services. Sometimes the problem has not escalated to the level of mandatory reporting to adult protective services, but the family may still benefit from another referral," Morrison-Banks added.
Community service organizations such as the National Multiple Sclerosis Society and the Multiple Sclerosis Association of America provide support and services for families in need.
The study was funded by the Health Care Delivery and Policy Research Program of the National Multiple Sclerosis Society. Morrison-Banks has received honoraria, royalties, or consulting fees from AbbVie, Acorda, Biogen, EMD Serono, Genentech, Landon Pediatric Foundation, Neurosearch, Inc, and Teva Neuroscience.
Mult Scler Relat Disord. Published online September 25, 2020. Abstract
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Cite this: Shocking Rate of Abuse by Caregivers in Adults With Advanced MS - Medscape - Nov 04, 2020.