Obsessive compulsive behaviors (OCBs) occur frequently in Huntington's disease (HD) and can cause great distress. These behavior symptoms are often hard for patients and families to describe, and doctors often do not routinely ask about or treat them. It is important for you to recognize OCB symptoms and learn about treatment, because, though it is estimated that as many as 50% of HD patients experience these symptoms, a study of European HD specialty centers found that fewer than 2% were prescribed OCB-specific medications. This is unfortunate because OCB treatment can make a big difference in the quality of life for both HD individuals and care-partners.
Though there has been little research done on this symptom in HD, there is much you can learn from the experts . .
Obsessive Compulsive Behaviors in HD: Expert Practice Survey Two years ago, psychiatry leaders from the Huntington Study Group (HSG) and the European Huntington's Disease Network (EHDN) published a review of OCBs in HD and treatment preferences obtained from a survey of a larger group of experts [Anderson K 2011]. Much of the discussion which follows comes from this article -- which can be downloaded in its entirety -- and subsequent presentations given by Drs. Karen Anderson and Mary Edmondson at HSG education sessions. First some definitions:
What is an Obsession? An intrusive thought that often produces anxiety.
What is a Compulsion? A repetitive behavior (or action) associated with the obsessive thought.
What is Obsessive Compulsive Behavior? The experts define this type of behavior as a repetition of a motor activity, word, thought, or emotion that occurs without an ongoing rationale for the behavior. The OCBs that occur in HD often differ from those seen in Obsessive Compulsive Disorder (OCD) because HD patients -- unlike OCD individuals -- often lack insight that the OCB is socially inappropriate. HD experts also call this symptom "perseveration" and note that it also occurs similarly in other diseases (traumatic brain injury, Alzheimer's, and schizophrenia) where brain pathways linking different areas of the brain (cortex and striatum) are damaged.
Some questions to ask, or how do I know it's an OCB?
- Do you get stuck on certain ideas that seem to go through your head over and over?
- Do you like to have certain things done on a very definite schedule?
- Are you worried about dirt, infections, or contamination more than other people?
- Is it upsetting to you when things change unexpectedly?
- Do you like to collect things, especially items that other people might find worthless?
- Do you like things arranged in a certain way? Do you get upset if someone else moves things out of its place?
- Are there certain actions that you do over and over?
- Do people say you ask the same questions over and over?
- Do you "get stuck" on an idea?
After you recognize the OCB symptom, you will need to take the initiative. Let your doctor know about it and seek specific treatment.
Management of OCBs in HD
Management includes behavioral interventions and drug therapies. Each type of treatment may vary with the stage of disease, degree of cognitive impairment, and the severity of the symptom. This symptom can occur prior to motor diagnosis and at any subsequent stage of the disease. Remember that no intervention can be expected to give total relief from OCB symptoms. The goal is to decrease severity, not to eradicate it.
Behavioral Interventions for OCBs
- Identify and prevent situations that trigger symptoms
- Set limits
- Gradually modify the activity
- Don't argue or attempt to rationalize
- Readjust expectations
Medication Interventions for OCB's: An easy to follow medication algorithm or treatment plan that your doctor may find useful can be down loaded from [Anderson K 2011].
- First choice: SSRI drugs (sertraline (Zoloft®), citalopram (Celexa®), etc. May need dosages on the higher side
- Clomipramine (Anafranil®) Effective, but has more side effects
- Antipsychotic drugs: Olanzapine (Zyprexa®) or risperidone (Risperdal®) when OCBs result in irritable or aggressive behaviors
Author Comments: Obsessive Compulsive behavior in HD is a serious problem that can result in care-partner burn out, patient aggression, and institutionalization. Though very important, OCB symptoms aren't recognized by families or doctors and often are not specifically treated -- even by HD specialty centers [Priller J 2008]. And it must be even worse outside of centers. As such, it is important that HD families take the initiative and recognize the symptoms, communicate symptoms to doctors, and insist on adequate treatment as detailed in the OCB algorithm article.
Anderson K, Craufurd D, Edmondson MC, Goodman N, Groves M, van Duijn E, van Kammen DP, Goodman L. An International Survey-based Algorithm for the Pharmacologic Treatment of Obsessive-Compulsive Behaviors in Huntington's Disease. PLoS Curr. 2011 Sep 20;3:RRN1261. PubMed abstract
Priller J, Ecker D, Landwehrmeyer B, Craufurd D. A Europe-wide assessment of current medication choices in Huntington's disease. Mov Disord. 2008 Sep 15;23(12):1788. doi: 10.1002/mds.22188. PubMed abstract