Many MS Patients Report Mistreatment by Caregivers

Marisa Wexler MS avatar

by Marisa Wexler MS |

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More than half of people with multiple sclerosis (MS) who require an informal caregiver have experienced abuse or mistreatment by that caregiver, according to a study conducted in California.

The study, “Validity and Reliability of the Scale to Report Emotional Stress Signs–Multiple Sclerosis (STRESS-MS) in Assessing Abuse and Neglect of Adults with Multiple Sclerosis,” was published in the International Journal of MS Care.

Nearly one in three people with MS require a caregiver to manage various aspects of daily living. In many cases, the caregiver ends up being an unpaid and informal position, often filled by a family member or friend. Being in this position can be extremely stressful, which sets the stage for conflict.

Adults with disabilities are known to be at an overall increased risk of abuse. Factors ranging from physical impairment, to cognitive difficulties, to social isolation and stigma may contribute to this risk. Abuse from caregivers, specifically, has been reported, but there is little scientific research on this complex issue.

Now, a team of researchers at the University of California, Irvine report the development of a standardized assessment to measure abuse and mistreatment among MS patients and their caregivers.

The assessment tool — the Scale to Report Emotional Stress Signs–Multiple Sclerosis, or STRESS-MS — was created by an advisory board that included MS specialists, experts in mistreatment of adults with disabilities, a caregiver, and a person with MS. Three versions were made: one aimed at patients, one at caregivers, and one for pairs. After a bit of refinement, the researchers put the assessment to the test.

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The Disturbing Trend of Caregiver Abuse in the MS Community

They administered the assessment to 102 people with MS who had informal caregivers; 47 of the caregivers also chose to participate. Most of the people with MS were female, lived in California, and were relatively affluent. Most caregivers were spouses or other relatives.

STRESS-MS was administered, along with other assessments, during an interview that lasted on average about two hours. All of the data from these interviews was reviewed by a panel of experts — including a physician, a social worker, and an adult protective services manager for dependent adults — to determine whether abuse or mistreatment had occurred.

The panel determined that 57 of the patients — more than half (55.9%) — had “definite evidence of having been abused or neglected since they had started to require a caregiver,” the researchers wrote.

The most common type of abuse was psychological, reported by 46 (45.1%) of patients. In addition, 23 (22.5%) patients reported being neglected, 18 (17.6%) were financially abused, 13 (12.7%) were physically abused, and five (4.9%) were sexually abused.

As examples, approximately 53% of people with MS said their caregiver had shouted at them in anger, and about one in 10 reported their caregiver had used their money to pay for things without asking. About 5% said their caregiver had neglected to provide food or pay utility bills, nearly 4% reported unwanted sexual touching, and 6.9% said they had been grabbed, pushed, or shoved in anger by their caregiver.

“As mandated reporters for suspected mistreatment, the study team reported 28 households (27.5% of the entire study population) to Adult Protective Services agencies in their home counties,” the researchers wrote.

The researchers conducted statistical analyses to ensure the STRESS-MS measurements were reliable and valid — meaning they could be used repeatedly to accurately measure mistreatment (as determined by the expert panel) — and found generally positive results.

“The STRESS-MS questionnaire was reasonably reliable and valid for detecting caregiver abuse and neglect in this study population,” they concluded.

Other statistical analyses showed that the risk of abuse was increased in MS patients who were depressed or had histories of aggressive behavior. By contrast, the risk was lower in patients who were older or had better social support.

“The single greatest risk factor for mistreatment was for the informal caregiver to spend 20 or more hours per week taking care of the person with MS,” the researchers wrote.

The scientists said this finding may be encouraging, since it implies that simply reducing the amount of time required of caregivers also could reduce rates of abuse, noting this is “a measurable objective if not an easy one to achieve.”

“While more than 50% of participants with MS in our study disclosed they had survived various forms of abuse or neglect, it must be acknowledged that the majority of informal caregivers are not abusive and provide excellent care under often extraordinarily challenging circumstances,” Elizabeth Morrison-Banks, MD, said in a press release. Morrison-Banks is a professor of clinical neurology at the UC Riverside School of Medicine and co-author of the study.

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