Irritability in Huntington’s disease is very common, and often occurs years before motor symptoms are evident. Irritability in HD is different than anger. It is a specific behavior typical of people who have lost their “executive” function. It is characterized by:
- Brief outbursts of rage followed by long period of calm
- The behavior is in reaction to a modest or trivial trigger
- It is not premeditated and does not involve planning
- The episode of anger serves no obvious goal or aim
- There is no buildup of emotion that would predict the angry behavior
- The person with HD is upset or embarrassed after the outburst, as opposed to blaming others or justifying behavior
Other things to know about irritability:
- Irritability is believed to be one of the earliest symptoms of HD with onset years before motor signs of the illness
- It can unnecessarily create havoc in the lives of people with early HD, since it is a very treatable symptom.
- Irritability is often expressed toward the person closest to the affected individual
- Consider talking to the doctor alone. The doctor can’t treat what he or she doesn’t know about. Confidentiality can be requested if there is concern about distressing the person with HD, or there is fear of retribution. Start communicating directly with the doctor before problems with established behavior occurs.
- Fatigue Pain
- Hunger Dehydration
- Change in Routine Illness
- Medication Issues Recent losses
- Holidays, special events Political or civic events
- Change in the lives of important family members
Irritability is highly treatable!
For information to share with your doctor about the treatment of irritability see: http://www.ncbi.nlm.nih.gov/pubmed/21975525
Early cues of distress:
- Increased volume of speech, increased rate
- Repetitive questions or comments
- Intense eye contact
- Moving into your personal space
- There may be no warning signs in HD irritability, or they may be very brief before the irritable behavior
What to say when someone is irritable:
- Use soft tone of voice
- Don’t argue
- Give reassurances
- Use “I” messages
- Let the upset person do most of the talking
- Reflect what you hear the person say so you are sure you understand the concern or problem
What you can do to de-escalates the situation:
- Use a non-threatening body stance – relaxed, arms down at side and not crossed or on hips
- Give the person space. Keep about 1.5 – 2 feet away or more if the person is escalating
- Try not to touch the person. If you must touch them, tell the person what you are going to do.
- Sometimes behaviors escalate despite everyone’s best intentions
- It is never too late to try something new
- Always look for ways for everyone to back down and leave
- Saving face can be very important to someone who feels he or she has nothing left but dignity.
Untreated irritability can progress to aggression. It’s important to pursue treatment as soon as possible as aggression can become an established behavior pattern. Simple medications can be very effective, and there is only so much that can be accomplished with environmental modifications. For more information to share with your doctor about the treatment of irritability see: http://www.ncbi.nlm.nih.gov/pubmed/21975525
What to do when behavior is out of control:
- Manage your emotions and stay calm.
- Don’t fight back or argue.
- Keep your distance
- Make the environment as calm and safe as possible. Stop or slow down the car. Take the kids to another room. Leave the restaurant.
- Try to distract the person. Call the person’s name sharply. Make a loud noise. Clap your hands. If you use this technique, use the same distraction each time so the person will learn that that you are telling them its time to calm down.
- Call for help. Have a safety plan in place.
If you have reason to believe someone
is in imminent danger, call 911.
- CLICK HERE to see a list of crisis center phone numbers for North Carolina counties.
- Call a national 24/7 crisis hotline:
Be Safe: Trust your instincts!
- Back off if you get the feeling you are unsafe
- Aggression is defined as:
- Behavior that threatens to damage property or actually damages property, whether it is minor or major damage
- Verbal threats of violence or striking another person with or without significant physical harm
- Violence is never acceptable; an urgent change in treatment plan is required.
- Know how to get in touch with your doctor, and what he or she wants you to do in an emergency.
- Children who witness aggression are much more likely to become aggressive as adults
For tips on behavior management, see iCARE