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Risks Factors for Suicide

Studies of suicide in HD have largely focused on the proportions of deaths attributable to suicide. These studies have produced quite varied results with rates between 0.6% and 10.1% of deaths in those with HD (Fiedorowicz, Mills, Ruggle, Langbehn, & Paulsen 2012). The overall suicide rate is about one percent so it is increased in HD by up to ten times the national average.

Many efforts have been made to better understand the determinants of suicide in HD and findings typically suggest that risk factors are similar to those of the general population (previous attempts, depressed mood). Monitor depression in the person with HD and ask about suicide regularly, as thoughts about death and suicide can be a part of depression. Suicide is of great concern in HD due to cognitive changes in the brain, including disinhibition and impulsivity.

What to Look For

There are a number of risk factors for suicide, some that are obvious and some that are more subtle.
Things to look for include:

  • Depressed mood
  • Expressed feelings of hopelessness
  • Expressed desire to be alone
  • Withdrawal from activities, friends, family, or society
  • Talk about “ending it all,” “not dealing with it anymore,” or generally about death
  • Active planning, for example specifically stating what he or she would do
  • Stated desire to put their life in order by saying goodbye to people or giving away possessions
  • Changes in behavior such as increased agitation or sleeping much more (or much less)
  • A sudden change in mood from depressed to happy.

How to Help

Based on the above criteria and your clinical experience, if you consider the person with HD to be at risk for suicide:

  • Provide a referral to a mental health specialist. Suicide is preventable and counselling can help a person deal with thoughts about suicide.
  • Encourage the person with HD to talk about their feelings with you, family members, caregivers or other trusted individuals.
  • Ask the person with HD if they have a specific suicide plan. If they do, do not leave them alone. Call a suicide prevention line or mental health professional.
  • Coach family and caregivers on how to react to discussions of suicide. It is common for people to get upset if they hear that someone is thinking about suicide. They may try to negate or dismiss the talk. Counsel them to listen supportively and to encourage the person with HD to share what they are feeling, but also to be prepared to call a suicide prevention line or 911 if they feel the person with HD is in imminent danger of hurting themselves.
  • If the talk of suicide is not specific, suggest that the person with HD contact a medical professional or mental health provider. For example, “I feel sad and scared when I hear you say that. Let’s get in touch with a doctor, ok?” If the person with HD does not want to talk to a doctor or mental health professional, recommend that the individual hearing about the suicidal thoughts make the call and alert the person’s doctor.
  • Have the family or caregiver of the person with HD remove all potential weapons from the home, including guns, bullets, rope and medications. Counsel family members that many chronically ill people may hide medication “in case I need them.” It is not only suicide which is problematic, but a decision such as, “I’m not right today – I need to take a few of those pills.”
  • Instruct the family, caregiver or person with HD to post emergency phone numbers by the phone.
  • Request regular contact to periodically evaluate mood changes. Monitoring symptoms of depression helps to identify any suicidal thoughts or feelings as they arise.
  • Make a contract with the person to let you know if he or she begins to feel badly.
  • Arrange for supervision.


Anxiety Disorders and HD

It is common for a person with any chronic progressive illness to experience some excess anxiety, or worries, about the future. However, symptoms of anxiety can become so severe that they interfere with the activities of daily living.
Anxiety can present in a variety of ways including:

  • General nervousness
  • Excessive worrying
  • Repetitive thoughts about troublesome topics
  • Fidgeting hands
  • Shallow breathing
  • Rapid heart rate
  • Sweating
  • Restlessness
  • Fear
  • Panic

Anxiety can serve as a common link among several distinct psychiatric disorders. These include social anxiety, panic disorder, and obsessive compulsive disorder. A person with HD may not meet the specific criteria for any one of these disorders, but they may show features of one or more of them.

  • Social anxiety is worry or fear about how one will be perceived in a social setting. It is not uncommon for persons with HD to worry that other people are looking at their choreitic movements. Additionally, people in the early stages of the disease may be concerned about how co-workers and friends will react to their HD.
  • Panic disorder is characterized by an acute onset of overwhelming anxiety and feelings of dread, often accompanied by physical symptoms including rapid heart rate, sweating, hyperventilation, light-headedness, or numbness and tingling of fingers and toes. The symptoms typically last about 15 minutes, but residual anxiety often remains.
  • Obsessive-compulsive disorder is characterized by recurrent intrusive thoughts or impulses (obsessions) that are anxiety provoking, but experienced as senseless. Compulsions are repetitive behaviors that are performed over and over, sometimes in response to an obsession or as part of a stereotyped routine that must be followed. The most common obsessions tend to focus on cleanliness (such as washing hands) or safety (such as checking to make sure the stove is turned off).

Although true panic and obsessive-compulsive disorders are rare in HD, they can occur. Again, it is more common to see components of these anxiety disorders, such as obsessive preoccupation with particular ideas.

Typically, anxiety symptoms become worse in new situations or when the person perceives him or herself as having insufficient skills to handle the situation. Many persons with HD find that they worry more than they used to, even about seemingly trivial matters.

Possible Causes

Much like depression, there are two main reasons that anxiety can be seen in HD. First, there is reactive anxiety to the challenging and changing situations in life. Whether someone is waiting for results from genetic testing, experiencing increasing difficulty at work, observing changing roles within the family or experiencing symptom progression, there are many sources for understandable worry. This can become problematic however, as many times changes occur concurrently, leading to increased worry and anxiety. The second reason for anxiety in HD is due to changes in the brain. Again, as the disease progresses, physical changes in the brain can both lead to a person developing anxiety, as well as experiencing increased difficulty in dealing with anxiety. These two factors are often connected, and this can lead to increased presentation of symptoms of anxiety.