Huntington's and Suicide - 10 September: World Suicide Prevention Day
The risk of suicide in Huntington's disease is very high. It is therefore necessary to monitor patients behaviors with due attention in order to prevent extreme situations.
Many 'difficult' words are related to Huntington's disease: hereditary, genetic, neurodegenerative, rare, but perhaps the most difficult is suicide. On the occasion of the World Day for the Prevention of Suicide, we believe it is important to reflect precisely on this word, the most difficult.
Antonio has been taking care of HD affected mother for many years.
His father also lives with them: he has serious health problems too, that often took him to hospitalization. Antonio has a brother, but in fact he is only assisting his parents, and it has always been like this. Antonio's mood has been quite depressed for some time. He reports that he often feels sad, gloomy, hopeless. He's been feeling this way for years now. The positive genetic test result worsened his mood.
In the 'down' moments nobody can find a communication channel with him, not even his partner, because he isolates himself and shuns all human contacts. Antonio follows the doctors' instructions, takes care of himself by correctly taking the prescribed drugs and never missing meetings with his psychotherapist. Over time, however, the feelings of sadness and despair have intensified more and more, the moments of isolation have increased, he continually mulls over his condition, on of his parents's, he feels alone and hopeless, he sees no way to exit. The only thought that raises him is to put an end to his life, in order to finally be able to find personal comfort and stop making the people around him suffer.
Antonio's story allows us to focus on an extremely delicate, unfortunately, frequent aspect in families with Huntington's disease, namely the high risk of suicide.
Huntington's disease has the highest suicide rate in human pathology, higher not only compared to the general population, but also compared to those suffering from other neurological diseases, such as Lateral Sclerosis. Amyotrophic (ALS), Parkinson's disease or Alzheimer's disease.
How can we help those at risk of committing suicide?
Talking about suicide is not easy, especially for the closest people: partner, children, parents. The topic is difficult in itself. In addition, the person involved tends to isolate himself, he does not want to share his emotional experience.
"We invite family members - says Dr. Barbara D'Alessio, President of LIRH Foundation" - to talk about it with the clinicians who follow the patient and, if they don't feel like it, we invite them to do it with us: we can help them in dialogue with expert staff and we can also put them in contact with those who live or have experienced similar situations ”.
Some signals or behaviors can represent an 'alarm bell' and must activate the attention of family members by guiding them, first of all, towards local first aid structures, such as mental health services, or towards the request for intervention by the specialist, such as a neurologist or a psychiatrist. A persistent mood depression, mainly characterized by a marked loss of hope for the future, if associated with an important perseveration of thought, easy irritability and anxiety, represents a psychological risk picture that should not be underestimated, which must turn on a bell alarm.
"Indeed, the perseveration of thoughts, behaviors and actions is the most important factor that can lead to extreme actions such as suicide, more than depression itself. Persevering means compulsively repeating a thought or an action, a frequent and evident characteristic in the advanced stages of the disease, but often subtly present even in the very initial phase, which is not clinically recognizable yet", explains prof. Ferdinando Squitieri, LIRH Foundation Scientific Officer.
Equally useful for a long-term management of the most at-risk behaviors, and of the suicidal thoughts related to them, is a multidisciplinary approach to the problem, which involves frequent monitoring by the neurologist (or psychiatrist) and the psychotherapist to address the problem from a pharmacological point of view, but also from a behavioral and cognitive prospective.
"Offering the patient (and the family member) a range of possibilities and 'tools' to be used, especially during the most critical moments, can make the difference between a story with a tragic ending and one without it", says Dr. Simone Migliore, Research Neuropsychologist of the Huntington Rare Diseases Unit at IRCCS Casa Sollievo della Sofferenza/Mendel”.