Psychological distress and psychiatric symptoms are terms that we can use to describe a range of situations that occur in Huntington's disease (HD) that are emotionally troubling and have negative impact on how we function as individuals and families. And we certainly have more than our share of psychological distress living and and coping with this disease.
All in our community, families and professionals alike tend to describe various symptoms, like depression, anxiety, irritability and others as if they are rigidly separate disease symptoms. Though there can be value in separating symptoms, this author believes this separation may also create barriers to understanding and optimally treating the individual with HD experiencing them.
Why separate symptoms? Because it is easier to define and study symptoms if they are treated as separate. This is particularly important when doing symptom research. Indeed separating certain symptoms can in specific circumstances lead to better treatments. For instance, perseverative behavior symptoms can sometimes be mistaken for psychotic symptoms, in which case the optimal treatment is different. It may be useful to think of apathy (unless caused by depression) as different from psychological distress because it is more closely linked to cognitive decline than any psychological/psychiatric symptom.
Why put other symptoms together? Because a number of symptoms often occur together, or one can lead to others, it can be useful to also think of them "as a whole". For instance, anxiety often occurs with depression. Irritability can occur alone, but often is present with both depression and anxiety, and it can lead to agitation and aggression. And sleep problems make them all worse. Learning about symptoms and how they overlap are the first steps to effective treatment. Early management of psychological distress symptoms, either with behavioral techniques and/or drugs can often prevent more severe ones like agitation and/or aggression.
"Psychological distress" terminology may carry less stigma? Maybe this is just semantics, but it may be easier to talk about these symptoms or seek professional help if thinking of milder symptoms as "psychological distress". Though there has been some progress when thinking of psychiatric symptoms as brain disorders, our society has a long way to go in removing stigma. Anything that helps our ability to talk about emotional or psychological distress will go a long way towards finding solutions.
- Depression and anxiety
- Irritability, agitation, and aggression
- Perseverative (or obsessive) behaviors
- Psychosis (how this is different from paranoia)
Author's comments: The entire community, families and professionals "separate" HD into different components of disease: motor, cognitive, and psychiatric. While this can be useful, I think it may also be a barrier to best treatment of psychiatric symptoms in HD. At least in the U.S., there are many more neurologists than psychiatrists who specialize in, and are frontline care for individuals with HD. They should be expert at treating the whole range of psychiatric symptoms. Why? Because it is often neurologists who can first diagnose early, milder symptoms and decrease the likelihood of escalation to a more severe symptom. And though it is the "gold standard", many, even most of our HD sub-specialty centers don't have easy availability to psychiatrists.