The paper, published in the November 2020 issue of Multiple Sclerosis and Related Disorders, found that 11.2 percent experienced physical abuse and 8.3 percent experienced sexual abuse; many of the participants experienced more than one form of abuse. This is the first published report of a nationwide survey estimating the incidence and prevalence of caregiver mistreatment of U.S. adults living with MS, according to the authors. “I think our most important finding is the number of people with advanced MS who reported abuse and neglect. We thought that we would find some level of mistreatment in this survey, but we were surprised by how prevalent mistreatment was,” says Elizabeth Morrison-Banks, MD, health sciences clinical professor at the UC Riverside School of Medicine in Riverside, California, and lead author of the study.
New Tool to Screen for Mistreatment in People With MS
Adults with physical disabilities are 2 to 4 times more likely than the general population to experience mistreatment, according to a study published in June 2015 in the Annals of Epidemiology. The U.S. Preventive Services Task Force recommends screening adults with disabilities for mistreatment, but there hasn’t been a validated screening tool for people with MS, and consequently, no documented rates of the prevalence of abuse and neglect. The authors of this study used a new, validated, self-report screening tool, the Scale to Report Emotional Stress Signs — Multiple Sclerosis (STRESS-MS), that includes questions about psychological, physical, and sexual abuse, financial exploitation, and neglect. The screening was performed via an anonymous phone survey. “Having a validated survey like this to use in our practices can help identify patients who are at higher risk for mistreatment,” says Dina Jacobs, MD, associate professor of neurology and the clinical director of the Penn MS and Related Disorders Program at the hospital of the University of Pennsylvania in Philadelphia. “This tool and this research are very valuable and will improve our ability to recognize abuse and neglect in people who have MS,” she says.
Nearly 44 Percent of People With MS Experienced Abuse or Neglect in the Past Year
The study was a collaboration between researchers in California along with the North American Research Committee on Multiple Sclerosis (NARCOMS), the largest MS patient registry of its kind, with over 38,000 members living with MS worldwide. The study focused on people with advanced MS who needed assistance for at least one activity of daily living and required a primary informal (unpaid) caregiver who was a family member or friend. A total of 206 people enrolled in the study. The average age was 59 years, 74.4 percent were women, and 96 percent were white. Nearly 3 out of 4 respondents were married, and 87.9 percent weren’t working. Research tracked both incidence, which was defined as a behavior occurring over the past year, and prevalence, which was defined as abuse or neglect occurring since the person with MS had started requiring a caregiver. People could report more than one type of mistreatment. Overall, 43.7 percent of people with MS had experienced mistreatment from their caregiver in the past year, and 54.9 percent of people had experienced mistreatment at some point. The overall incidence and prevalence of neglect and abuse was as follows:
Psychological abuse: 31.6 percent experienced in the past year, 44.2 at some pointFinancial abuse: 12.1 percent experienced in the past year, 25.2 at some pointNeglect: 12.1 percent experienced in the past year, 16.5 percent at some pointPhysical abuse: 5.3 percent in the past year, 11.2 percent at some pointSexual abuse: 1 percent in the past year, 8.3 percent at some point
It can be difficult for anyone, even if they don’t have a disabling condition like MS, to disclose abuse that’s happening, says Dr. Morrison-Banks. “If anything, a survey like this might tend to underestimate the amount of abuse and neglect,” she adds. “More than 1 in 4 people — 28 percent of respondents — reported the most serious types of abuse, which we defined as physical and sexual abuse, which was striking to me,” says Morrison-Banks.
Inadequate Resources for People With MS and Their Caregivers a ‘Setup for Disaster’
“Sadly, I’m not surprised at all by these findings,” says Dr. Jacobs. “Having been in the field for more than 20 years, abuse and neglect are things that I have witnessed or suspected for many of our patients, who are so vulnerable and so dependent on their caregivers,” she says. A big part of the problem is that the most vulnerable people in our society don’t have adequate resources to assist them, according to Jacobs. “For people who don’t have the financial resources to outsource care, which is the majority of people, family members are left to figure out how to do this on their own,” she says. Sometimes caregivers are working full-time and caring for children in addition to being the primary caregiver for their loved one with MS, with no backup, says Jacobs. “It’s a setup for disaster,” she adds. Although abuse is not justified in any situation, one of the reasons it happens is because there’s so much pressure on the caregiver, she says. “As a country, we’re doing a poor job of providing a safety net for those people,” says Jacobs.
Significant Alcohol Use Doubles the Risk for Mistreatment
The reasons for the mistreatment cannot be fully uncovered with this research, but the investigators did identify certain factors and behaviors that seemed to increase the risk for abuse and neglect. Family members who had to be the primary caregiver every day with no relief were at higher risk of mistreating the person with MS, according to the authors. People who experienced abuse and neglect reported less social support, lower agreeableness scores, more alcohol use, and higher levels of fatigue and cognitive impairment. Their caregivers were more likely to have mental health diagnoses; those caregivers with a mental health diagnosis were 13 times more likely to mistreat the person with MS. Any significant alcohol use by people with MS or their caregivers more than doubled the risk for mistreatment. RELATED: Careworn by Caregiving: A Population at Risk From Chronic Stress
Communication Is Crucial in Reducing the Incidence of Abuse and Neglect
When there’s not positive and effective communication between the caregiver and the person with MS, that can be a risk factor for abuse, Abbey Hughes, PhD, a researcher and rehabilitation psychologist at John Hopkins Medicine in Baltimore who works with people with MS. “Sometimes caregivers try to protect the person they are caring for because they don’t want to burden them. They stuff feelings down and avoid talking about them,” says Dr. Hughes. That may be well intentioned, but when we avoid things, they tend to come back stronger, she says. “That can cause feelings of hopelessness and helplessness, which can lead people to act in ways that aren’t consistent with their values; in an abusive situation, that could be acting on that abuse,” says Hughes. These are more general human dynamics and behaviors, but they really play out when you have a relationship between people where one person is experiencing a lifelong, unpredictable chronic health condition and navigating a relationship with someone who might be providing certain levels of care for them, she adds.
Expert Advice on Reducing the Risk of Abuse and Neglect for People With MS
Even though there can be tremendous challenges and pressure on caregivers, there is no excusing abuse and neglect, says Jacobs. “We know there are circumstances and behaviors that can increase the risk for mistreatment, and so trying to avoid those can potentially decrease the chances that it will occur,” she says. Stay connected with a support community. Isolation is one of the biggest risk factors, says Jacobs. “I encourage both the MS patient and their caregiver to make sure they have other people they can reach out to, whether that is their healthcare providers or family members and friends,” she says. People are at exceedingly high risk for isolation right now during the pandemic, says Jacobs. But, “There are more virtual support groups, which makes it easier for many people to attend, because they don’t have to worry about transportation or childcare,” she says. RELATED: How MS Contributes to Isolation and What You Can Do to Stay Connected Practice self-care. “The first step is learning about your own values and what self-care looks like for you. When you’re in survival mode, it can be hard to take a pause to include those things in your life,” says Jacobs. Find out what recharges you — whether that’s a video chat with an old friend or a 30-minute walk around your neighborhood, and then make a plan to fit it into your week. Seek out support as a couple. For people with MS who are married to their primary caregiver, it’s important to try to seek support and connection as a couple, says Jacobs. “Find opportunities to be a couple and take care of each other emotionally,” she says. Make your environment accessible. If possible, try to make your home more accessible for the person with MS by removing barriers that keep them from doing some basic tasks on their own, suggests Hughes. “This can lower the caregiver’s stress level, and when your stress level is lower, you’re much less likely to engage in abusive behaviors,” she says. Avoid drug and alcohol abuse. “When people are stressed — whether it’s the person with MS or their caregiver — and they turn to drugs or alcohol as a way of dealing with the stress, it just amplifies the situation,” says Jacobs. It’s important to address substance abuse if it exists and to reach out for professional help if necessary, she adds. Get help if you need it. If you’re feeling abused, you have every right to call adult protective services and seek support to try to get additional resources, says Hughes. “That doesn’t necessarily mean removing the caregiver from the home — that’s usually a last resort — but it can be a way to find resources to help the caregiver, too,” she says. “Abuse doesn’t happen in isolation; there are systems that create context for the abuse to happen. When we address the systemic barriers, abuse is much less likely to happen,” says Hughes. You aren’t alone in your struggles. Both the person with MS and their caregiver need to realize that they’re not alone, says Jacobs. “Many people are going through the same struggles that you’re going through. It might look like they’re coping better, but when you talk to others about these issues, you realize that a lot of people are dealing with similar stressors. That, in and of itself, can be a relief,” she says.
