Denial in an individual with HD is common. There are at least two reasons that denial can occur in
HD. Commonly, denial is considered a psychological inability to cope with distressing circumstances. We often see this type
of denial in cases such as loss of a loved one (denial that they are gone), terminal disease, serious illness, or injury (i.e.
denial of cancer or HD diagnosis). This type of denial, however, typically decreases over time as the individual begins to
In contrast, individuals with HD often suffer from a lack of insight or self-awareness. They are unable
to recognize their own disabilities and are unable to evaluate their own behaviour.
This type of denial is sometimes
called organic denial and is a condition that may last a lifetime. Given that we typically assume that denial is under
the control of the individual, the term may not be useful for persons with HD suffering from this organic type of denial.
Therefore, we recommend that "unawareness" be used to describe this behaviour in HD.
Unawareness often plays a significant
role in difficult and seemingly irrational behaviour. At first unawareness is beneficial because it keeps individuals motivated
to try things and to avoid labeling themselves as
"affected" or "impaired". Unawareness can also be a useful defense mechanism
On the other hand, anger may develop from unawareness because individuals with HD cannot understand
why they cannot go back to work or live independently. HD persons with unawareness sometimes feel that people are unjustifiably
keeping them away from activities that they could do (e.g., driving, working, caring for children).
You may hear an
individual with HD enumerate a long list of people who are at fault for his or her failure to return to work, to drive, to
travel, or to live alone. This type of unawareness can become dangerous if the individual with HD and unawareness attempts
to do things independently that are not safe.
Often, these individuals are considered to have poor judgment. Judgment is impaired, in this case,
because of the unawareness of limitations that HD can create.
Unawareness is not only a problem for the individual
with HD, but also for health professionals, friends, and family members.
There are some family members and/or health
professionals who delay making the diagnosis or keep the diagnosis from the affected individual because they are concerned
that s/he "cannot handle it".
Some people interpret the unawareness as a sign that the individual "does not want to
know" or will "get depressed" if s/he finds out s/he has HD. There is no evidence to suggest, however, that talking about
to a person with unawareness will cause negative consequences.
-damage to circuits connecting the caudate nucleus and the frontal and parietal lobes
-normal psychological response
to an overwhelming situation.
-the circuit that relays information from other centres in the brain to the frontal lobes
(where appropriate actions are considered and initiated) is interrupted by caudate degeneration secondary to HD.
Possible Causes continued
In the final case, although
the person with HD may still be able to see and hear accurately, the information seen and heard is often not available to
the boss or decision maker of the brain.
Consider the example below. The eyes see that the person has two different
shoes on and the visual information gets sent to the occipital cortex, which has cells to read shape, color, and movement.
This information then travels toward the frontal lobes, where the boss will
instruct the "motor controller" to change shoes.
When an individual has HD, however, the cells in the caudate are breaking down and the information
never gets relayed back to the frontal lobes.
Miles continues to say that he will live with his wife and she will care for him, even
though she has filed for divorce.
Bob bathes and shaves only when asked, due to his difficulty recognizing how he smells
or when his hygiene is poor.
Claire will not go to the doctor because, "Nothing is wrong with me, I'm not sick."
Steve will not say he has HD.
When asked, Beverly says she has no change in her speech or walking, and no uncontrollable
movements, although she has severe chorea and slurred speech.
Mary notes that her speech and coordination are not the same as they used to be, but says
it is because of the "fender bender" she was involved in two years ago.
Rosie never complains. She denies needing help at home, yet her legs, arms, and hips are
badly bruised. (Many HD patients are unrealistic about the potential for falls and injuries in the tub or shower. Don't expect
them to raise this issue.)
Strategies for Unawareness
There is no single way to cope with this difficulty. At times it may require the caregiver
to use creative thinking to get the person with HD to co-operate with a request.
Accept "unawareness" of illness as a component of HD that is not a treatable obstacle.
Oftentimes, the person with HD does not seem to change or "accept" the HD. Stop expecting the awareness to "kick in" the "ah-hah!"
may never occur.
Avoid interpreting non-compliance with therapy or nursing care as intentional. It may be
helpful to develop a contract that includes incentives for compliance. It is important that the rewards (e.g., foods, activities)
be things that the person likes, not just things the caregiver chooses.
It may be that the person can talk about his or her problems, but not acknowledge that
he or she has HD. This being the case, address the problems and avoid the HD label.
A formal written agreement that explains expectations will increase the chances for success,
make goals be realistic, avoid requiring awareness and/or acceptance.
Counseling may help someone with HD come to terms with his/her diagnosis but may have little
impact on specific insight.