Mistreatment or Abuse by a Caregiver

It is estimated that 1 in 4 people with multiple sclerosis (MS) experience disability that is significant enough to warrant formal caregiving.¹ Most of this caregiving is performed by family members, but it can also be done by outside professionals. Although families don’t like to think about it, mistreatment or abuse by caregivers can occur.

Mistreatment and abuse can happen at any time. It is important to be aware of the risk factors, signs, and symptoms.

What is caregiver abuse?

While many people think of physical abuse when they hear the term “abuse,” caregiver abuse can take a variety of forms. Sometimes abuse is less obvious, especially in the context of caregiving. Abuse can include:^1,2

• Verbal abuse, like cruel or demeaning language
• Neglect, such as withholding food or drink, not changing soiled undergarments or bedding, or isolating the person
• Subtle forms of abuse, like purposely delaying assistance with dressing, bathing, or toileting; or handling a person roughly while assisting them
• Sexual abuse
• Psychological abuse
• Financial abuse, including controlling one’s access to their finances or stealing their money

Even if the abuse is not obvious, it is not acceptable in any form.

What are the risk factors for caregiver abuse in MS?

Frustration is a very common factor in many abuse situations. In some cases, a caregiver, whether family member or paid, may be frustrated with the demands of the job, by the physical/emotional support needs, the time and energy spent on the job, or their lack of patience.² Burnout or feeling overwhelmed can also contribute to this, especially with family members who are 24/7 caregivers.

Lack of communication, especially about difficult topics, is another risk factor in abusive caregiving situations. Family members or caregivers might feel guilty for feeling resentful, sad, frustrated, or exhausted, which can then come out in abusive actions.²

Feeling alone and trapped in a hopeless situation is another common risk factor for abuse. If a caregiver feels like they don’t have anyone to talk to about their situation or that the situation has no relief in sight, they can become frustrated and depressed. This can lead the caregiver to act abusively toward the person with MS.²

What are some possible signs of caregiver abuse?

While caregiver abuse may be well-hidden in some cases, sometimes there are signs. They can include:^3,4

• Caregivers making negative comments about the individual for whom they are caring
• Not giving medications, food, or drink to them when needed/requested
• Not including the individual in financial or medical decisions
• Ignoring the individual’s fatigue or frustration
• Centering themselves in the person’s care (i.e., making it all about them)
• Forcing the person to do a treatment they do not want
• Making the person undress for no reason
• Isolating the individual from friends and family
• Overcharging or double-billing for caregiving
• Recommending fake treatments

If you are concerned about possible abuse, think about whether the caregiver’s behavior has followed a pattern and whether the behavior has escalated over time.³

How can the risk of caregiver abuse be reduced?

First and foremost, keep in mind that any form of abuse, even when the situation is frustrating or when the caregiver is upset, is not acceptable. Even if the abuse isn’t violent, it is still abuse and should be immediately addressed.

Caregivers need to acknowledge that taking care of a person is difficult, especially if the person has a chronic and unpredictable condition that is physically and emotionally challenging.² Both parties can be understandably frustrated and upset at times. Talking about this and acknowledging it allows problem-solving to take place. This helps reduce the amount of frustration in general, which lessens the risk of abuse.

These resources can help reduce the risk of abuse:²

• Caregivers should be able to reach out to friends, family, or supervisors for support and assistance
• If caregiving is being done by family members, find a caregiver support group, either virtually or in-person
• When possible, use assistive technology or devices that help make caregiving easier
• If caregiving is too demanding for family to do alone, ask the doctor for referrals for agencies or call the National MS Society at 1-800-344-4867

Help is available

If you are being abused by a caregiver or are concerned about caregiver abuse to someone else, talk with the individual about what they may be experiencing. Talk to your medical team and let them know what is going on, or call the National Domestic Violence Hotline at 1-800-799-7233.³ No one needs to tolerate abuse, not even from a caregiver. Your safety and health are most important.