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What is unawareness and how do I deal with it?
By Anne Leserman, MSW, LISW
Clinical Social Worker, HDSA Center of Excellence at University of Iowa, Iowa City, IA, and winner of the 2011 HDSA Patient & Family Services Award.
Unawareness of Huntington disease (HD) symptoms is a difficult concept for many to understand. How is it possible that someone with HD who has had trouble keeping their balance, to the point of often running into things, has no awareness of their symptoms? Or maybe more subtly, the person with HD who has had some fender benders but doesn’t seem to equate these accidents with their declining ability to drive. The term “unawareness” is used when talking about HD symptoms because it is more accurate and very different than denial.
Sometimes, unawareness is confused with denial. Denial is the psychological inability to cope with distressing events. Psychologists typically use this term when someone has experienced a death of someone close to them or a loss. You might think denial would apply to a person with HD; that they might want to deliberately put out of their mind that they will or do have disease symptoms. But we have some control over our denial and it seems to fade over time. Unawareness, on the other hand, is a part of the disease process and typically becomes more pronounced as the disease progresses.
The unawareness that occurs in HD is not intentional and is typically caused by damages to circuits in the frontal lobes of the brain. Another term for this unawareness is anosognosia. People with diseases like Parkinson’s or Alzheimer’s have similar unawareness problems because of disruptions in the same section of the brain. In more advanced HD, these brain disruptions can be characterized by the term dementia. Examples of dementia symptoms include slowing of mental processing (for example, the former cashier who has difficulty making change), forgetfulness, having trouble organizing events or tasks that once seemed easy, apathy and depression. A person with HD may have trouble evaluating his/her own behavior or performance and may have trouble understanding someone else’s point of view.
Now that you understand that unawareness is a symptom of HD, how do you deal with things that seem so obvious to you but are not recognized by your loved one?
- There is not one standard way to avoid problems of unawareness. Knowing your loved one and having a set of strategies that work in different situations is best.
- Try to avoid power struggles. Attempting to get your loved one to have insight into their problems will probably create more frustration.
- Unawareness is a part of the disease and there may never be the moment of insight that the person with HD understands his/her deficits.
- Try the use of a “contract” to achieve compliance and don’t assume that non-compliance is intentional. Maybe there is one person who is best at getting the person with HD to comply. This could be another family member or a caregiver at a facility. Utilize that person to help your loved one to comply with necessary tasks. (look for an example of a contract at this website http://hartfordauto.thehartford.com/Safe-Driving/Car-Safety/Older-Driver-Safety/Dementia-Activity/agreement_form.html)
- Pick your battles. Is it more important to attend a family gathering or is it more important that he/she wears a clean shirt?
- Safety first. Allowing your loved one to have access to his/her car keys when the doctor advised no driving creates a dangerous situation for your loved one and others on the road. It may be necessary for you to help your loved one keep himself/herself safe by enforcing your doctor’s recommendations.