Changes in behavior is a common feature of Huntington’s disease. The changes may frustrate both the person with Huntington’s disease and the people living with them. A common symptom of HD is agitation. Everyone with HD won’t become easily agitated and the level of agitation may change during different phases of the disease. The symptom of agitation can occur before any unusual movements begin.
Neuropsychiatrists define agitation as inappropriate behavior that may include physically or verbally aggressive behavior, restlessness, and pacing. Agitation and aggression can result in suicide, assault or homicide and can have legal consequences.
What can aggression look like?
- Explosive emotional outbursts
- Person with HD is unaware of the intensity of their reaction
- Dramatic change in behavior
- Yelling and making threatening statements
- Throwing things and punching objects or people
There are many ways to help a person experiencing agitation and for preventing the person with HD from becoming agitated.
Here are some first steps to preventing and reducing agitation and aggression:
- Check to see if the person with HD is hungry or thirsty. Are they hangry?
- Is the person with HD sleeping well and getting enough rest? Could they be tired and cranky?
- Check to see if pain is causing irritability
- Does the person with HD have any other medical problems causing agitation?
- Could a side-effect of a medication be causing disorientation, nausea, headaches, or another symptom that’s bothersome?
- Is a loud noise or other type of distraction causing the person with HD to be annoyed?
- Disruptions to routines are hard on people with HD. Is a favorite person or activity unavailable? Is this disruption causing fear?
- Is the person with HD expressing frustration because they are unable to communicate or do something that used to come easily?
If you’re loved one is starting to let you know they are agitated, here are some calming actions:
- Stay calm and find a quiet, relaxing area to de-escalate the situation
- There are medications to reduce the frequency and severity of aggressive behaviors. Check with a doctor to find the right medical treatment.
- Small studies have shown that medical cannabis hasn’t improved participants behavior or involuntary movements.
Ways the primary care partner and the whole family can do improve safety:
- Keep dangerous objects out of reach
- Identify what makes your loved one with HD easily agitated
- Keep calm
- Maintain routines
- Self-care – you won’t be able to stay calm and on top of the situation if you are feeling burnt-out.
- Remind yourself that your loved one isn’t aware of the intensity of their reactions and won’t be able to adjust his/her behavior.
- Find distractions like a favorite video, song or treat to take their mind off what is bothersome.
- Try meditation
- Find activities that are within the person’s current range of abilities
- Issuing ultimatums and confronting the person with inappropriate behavior won’t help and should be avoided.
- Speak clearly and communicate simply to minimize feelings of frustration.
- Everyone’s safety is important. Create a Safety Plan while things are calm. Your counselor at HD Reach can help.
