This is disturbing and, unfortunately, not surprising.
More than 50% of people with advanced multiple sclerosis report they’ve been mistreated by a family member or friend who cares for them, according to the results of a survey by researchers at the University of California, Riverside.
Much of that mistreatment (44.2%) is described as psychological, often involving being insulted or sworn at in anger. This doesn’t surprise me, because I often read about such situations on social media. The person with MS is usually complaining about a spouse or a parent.
Financial misconduct was the second most common type of caregiver abuse, reported by 25.2% of those polled. This involves the caregiver taking cash or items without permission. Neglect, usually something like refusing a request for help, was reported by 16.5%. A little over 11% reported physical abuse, and just over 8% reported sexual abuse.
Many things add to the risk of caregiver abuse
“We knew we would find some level of abuse and neglect, but we were surprised by how prevalent it is,” Dr. Elizabeth Morrison-Banks, who led the study, told UC Riverside News.
According to Morrison-Banks, family members are often forced to help a person with advanced MS when they can’t afford a paid caregiver. But those family caregivers may also be working full-time or caring for children. They may even have health issues of their own. “All of these challenges can increase risk of mistreatment,” Morrison-Banks said.
The telephone survey of 206 adults found that the risk of mistreatment increased when a family member served as the primary caregiver day after day, with no breaks. A poor relationship with the caregiver prior to the onset of MS nearly tripled the abuse risk. Other risk factors included the person with MS having significant cognitive impairment or fatigue, or either the caregiver or the person with MS using alcohol.
“Being a full-time family caregiver for someone with substantial neurological disability often presents significant challenges,” Morrison-Banks said. “Many families take these challenges in stride, but others end up in situations of abuse and/or neglect.”
Are there solutions?
Morrison-Banks and her team don’t suggest any, they only raise a warning flag for healthcare professionals to be on the alert. “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,” she said.
But as people with MS, we also need to be our own advocates as much as possible. The National Multiple Sclerosis Society cautions that people with MS “may not want to risk upsetting the people who are providing them with care and assistance.” But we must.
It seems that social media groups are where people with MS often reach out for help with abuse because their family caregiver doesn’t understand, doesn’t listen, or just flat-out doesn’t care. They find solace there, but not usually any real solutions.
I think talking with the neurologist about the abuse is a must. Asking the local MS Society office for advice may be helpful.
Have you been in this situation? Do you have any suggestions? Please share in the comments below.
(A version of this post first appeared in my column on the MS News Today website.)
(Featured image by Ulrike Mai from Pixabay.)
