More Than Half of American Adults with Multiple Sclerosis Report Mistreatment by Caregivers

Patients with multiple sclerosis who rely on family members as caregivers may be at particular risk for mistreatment, as those caregivers struggle to balance work, childcare, and health concerns of their own.

A new study has found that nearly half of people with advanced multiple sclerosis (MS) have been emotionally abused by a caregiver, whereas others reported financial exploitation, neglect, physical assault, or sexual assault.

According to a press release, 4 in 10 reported emotional abuse, 1 in 4 reported financial exploitation, 1 in 6 reported neglect, 1 in 9 said they have been battered, and 1 in 12 said they have been sexually assaulted by a caregiver.

“We knew we would find some level of abuse and neglect, but we were surprised by how prevalent it is,” said study leader Elizabeth Morrison-Banks, MD, MS Ed, in a press release. “The findings of this study represent a collective cry for help from so many families affected by multiple sclerosis across the United States.”

MS is an autoimmune disease affecting more than 2.3 million people worldwide. As a degenerative condition, it can periodically shutter communication between the brain and other parts of the body, resulting in symptoms such as numbness and tingling in the arms and legs, as well as blindness and paralysis. Morrison-Banks said some patients can live with MS for many years with milder symptoms and they may never need a caregiver; however, many patients may need more help.

“Others are less fortunate and develop neurological disability that can make them vulnerable to abuse and neglect if they are unable to move around independently, take care of their own finances, or get away from the situation when family conflict escalates,” Morrison-Banks explained. “These problems are compounded if the person with MS and family lack financial resources.”

According to the press release, the research paper is the first published survey documenting the nature and extent of caregiver mistreatment for adults with MS in the United States. The preliminary study found that nearly 55% of respondents disclosed undergoing some form of mistreatment since they started receiving care from a family member or friend.

Morrison-Banks said that paid caregivers may not be an option for many patients, so they may rely on family members or friends who are also balancing work, childcare, or health concerns of their own. These challenges can increase the risk of mistreatment, although Morrison-Banks emphasized that the majority of family caregivers do not mistreat those they care for.

The investigators said they do not fully understand all of the risk factors for mistreatment, although the survey found that family members who had to be the primary caregiver every day were at higher risk of mistreating the person with MS. Other risk factors included the person with MS having higher levels of cognitive impairment or fatigue, the caregiver having a mental health diagnosis, alcohol use by either the caregiver or the person with MS, and lower levels of social support within the family.

The press release said they were surprised to find no published studies documenting how many people with MS have experienced mistreatment. Community service organizations, such as the National Multiple Sclerosis Society, the Multiple Sclerosis Association of America, and local organizations, also provide support and services for families in need.

“Our study is a good reminder for all that mistreatment is occurring out there for people with MS and other disabling conditions,” Morrison-Banks concluded. “Health care professionals should maintain a high index of suspicion. We can’t assume that all people with advanced MS are living in safe situations, even if they don’t bring up their concerns on their own.”

REFERENCE

More than half of American adults with advanced multiple sclerosis report mistreatment by caregivers [news release]. UC Riverside; October 27, 2020. https://news.ucr.edu/articles/2020/10/27/more-half-american-adults-advanced-multiple-sclerosis-report-mistreatment. Accessed February 8, 2021.