Majority of MS Patients in US Report Mistreatment by Caregivers in Survey

In a nationwide survey of caregiver abuse and neglect among Americans with advanced multiple sclerosis (MS), more than half of respondents reported some form of mistreatment, with psychological and financial abuse being the most common.

Having a caregiver with a mental illness was the greatest risk factor for mistreatment, the survey found, but risk also rose with  alcohol consumption, either by the patient or the caregiver, and a need for daily caregiving.

These findings highlight a need for better ways to address and prevent mistreatment of MS patients.

The study, “Abuse and neglect of people with multiple sclerosis: A survey with the North American Research Committee on Multiple Sclerosis (NARCOMS),” was published in the journal Multiple Sclerosis and Related Disorders.

An estimated 30% of U.S. adults with MS — more than 200,000 Americans — are sufficiently disabled to require caregiving, which is mainly provided by family members who are not financially reimbursed for their services.

While previous studies have shown that people with disabilities are at higher risk of being mistreated than the general population, data are limited on the frequency of caregiver abuse and neglect among MS patients. This may be due to a lack of validated screening tools of such mistreatment in MS.

In addition, “the risk factors for mistreatment among people severely affected by MS are not well understood but likely include social isolation, cognitive impairment and increasing dependency for physical care needs, all of which point to MS as an important high-risk condition in which to study caregiver mistreatment,” the researchers wrote.

A research team set out to determine the frequency and risk factors for caregiver abuse and neglect among adults with advanced MS enrolled in the North American Research Committee on Multiple Sclerosis (NARCOMS) registry.

NARCOMS is the largest MS patient registry of its kind in the world, with 38,000 members living with MS worldwide.

The team conducted an anonymous telephone survey of 206 adults (153 women and 53 men) with advanced MS-related disability, meaning they required help for at least one daily life activity from an unpaid family member or friend.

Patients’ demographic and clinical data, as well as information about the caregiver and their relationship with the patient, both currently and prior to disease diagnosis, were collected through the survey.

Five categories of mistreatment — psychological, physical, and sexual abuse, financial exploitation, and neglect — in the previous year and since the start of required caregiving were measured through the validated Scale to Report Emotional Stress Signs – Multiple Sclerosis (STRESS-MS).

Patients’ mean age was 59.3, and they had lived with an MS diagnosis for an average of 21.7 years. Most were Caucasian (96.4%), married (72.8%), unemployed (87.9%), and using a disease-modifying therapy (83.5%).

Results showed that 54.9% of respondents reported some form of mistreatment since the start of caregiving by a family member or friend, with 31.6% saying it occurred in the previous year.

Psychological abuse (44.2%) was the most prevalent type of mistreatment, and most often involved being “insulted or sworn at in anger.” This was followed by financial abuse (25.2%), which mainly involved taking cash or valuable possessions without permission. Fewer patients reported caregiver neglect (16.5%), most commonly refusing a request for help, and physical (11.2%) or sexual abuse (8.3%).

One-third of participants (33.6%) reported an occurrence of multiple forms of non-physical abuse, and 28.3% experienced physical abuse, sexual abuse, or both, and were considered to be a “severe abuse subgroup” by the researchers.

Patients reporting abuse also experienced lesser social support, more alcohol use, and higher levels of fatigue and cognitive impairment.

Daily caregiving was found to be a risk factor for caregiver abuse or neglect. The greatest risk factor for mistreatment were caregivers with a diagnosed mental illness, which increased the likelihood of mistreatment by 13 times.

A “poor” relationship with the caregiver before MS onset increased the risk of mistreatment by nearly three times, while past or present alcohol use by patients or caregivers more than doubled the risk.

“The present article describes the first published survey documenting the nature and extent of caregiver mistreatment of adults with MS in the United States,” the researchers wrote, adding that the observed mistreatment frequency “falls within the published range of mistreatment rates for adults with other physically disabling conditions.”

These findings suggest that “four in ten people with advanced MS are emotionally abused by someone responsible for caring for them, one quarter are financially exploited, one in six are neglected, one in nine are battered, and one in twelve are sexually assaulted by a caregiver,” the team wrote.

Researchers emphasized that future studies are needed to determine the occurrence of caregiver mistreatment in other settings, such as those involving paid caregivers (including trained clinicians) and long-term care facilities.

Further research into viable approaches to address and prevent abuse and neglect is also key, the researchers stated, and they hope MS clinicians find the STRESS-MS questionnaire useful to assess caregiver mistreatment among their patients.