Caring For People With HD

Abuse of the Patient
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 Abuse of the Patient
Caring for People with Huntington's Disease
Department of Neurology
University of Kansas

The patient with moderate Huntington's disease, like any person suffering from a chronic disease, can become an easy target for abuse. This can be a result of the mental changes that he or she has undergone, the caregivers inability to adapt fast enough, or the fact that the patient with Huntington's disease is an easily identified victim.

The abuse can be either way. A caregiver can abuse the patient and the patient can abuse the caregiver and the rest of the family. The section on behavior has information on working with the behavioral changes associated with Huntington's disease.

Abuse of the person with Huntington's disease can range from the overzealous expression of frustration on the part of the caregiver or family members in dealing with the patient's behavioral problems to financial exploitation and beyond.

If you suspect that someone is abused you must take the steps to report the abuse to the proper agencies. Do not let the person become isolated and feel that they have no place to turn for help. At the core of a significant amount of abuse is the perpetuation of the feelings of worth-lessness and despair that tie the victim to the perpetrator.

Verbal abuse occurs when a person is constantly berated for the actions or inactions. The comments can be as innocuous as "Oh, you're going to wear that again?" to language that directly belittles the person "You are worthless. If I did not take care of you, you would not have any place to go. No one wants to see you or be around you. I am all that you've got." Foul language is not required to make someone feel badly.

Physical abuse happens when a person is struck with anything (a fist, a baseball bat, a knife) with the intent to cause harm. You can see evidence of this as black eyes, cut lips, cigarette burns and bruises. Some perpetrators are crafty and will only strike the person on parts of the body that will not show in public (the stomach or back).

The victims, because of their feeling of isolation, will attempt, sometimes quite successfully, to cover up or explain away the marks. They may say that they fall frequently or that they stumble against the furniture.

Falling is part of Huntington's disease which can cause bruising of the legs and arms. But bruises can also be a sign of physical abuse.

When in doubt, err on the side of preventing further abuse through reporting the abuse to someone who can help. The costs may be too great if the abuse is allowed to continue.

Exploitation can happen to the person with Huntington's disease in a wide variety of ways. Along with the clumsiness of Huntington's disease that may make writing a check difficult, there is the Dementia  that may make it difficult for the patient to understand all that is happening. They may fall prey to sales people trying to convince them to invest in their schemes or to donate money to a cause.

If you feel that the person you care for has trouble understanding these situations you should

  • work with them to appoint a guardian who will oversee their financial matters,
  • get rid of their credit cards
  • arrange for direct deposit of pension checks, social security payments, disability payments, etc., directly to their bank account
  • establish a durable power or attorney for health care decisions (US).

Sexual abuse is a difficult area for many to deal with. As Huntington's disease starts and progresses, there is a loss of the social inhibitions that we have learned to control our behavior. Thus, a patient may seek out sexual satisfaction at inappropriate times, or may be enticed into sexual liaisons that they may have wished to avoid before they became symptomatic.

In addition, many patients have alterations in their interests in sexual matters. They may have paraphelias, where their sexual interests are centered on non-traditional areas such as leather clothing, homosexual activity (where previously they had been heterosexual) and so forth. There is nothing inherently wrong with these changes as long as they can continue to enjoy their sexuality with no harm to themselves or to others.

In this day and age, becoming sexually promiscuous can leads to AIDS, which is just as fatal as Huntington's disease and just as unpleasant. Huntington's disease can not be prevented once you have inherited the gene, sexually transmitted diseases can be. Use of condoms is advised for the sexually active, whether they have Huntington's disease or not.