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Demenita In HD
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Demenita and The (HD) Patient
Caring For People With Huntington's Disease
Kansas University Medical Center
The three most profound behavioral problems in Huntington's disease come from the dementia (loss of the ability to reason), the altered perception of the world and the changes in family dynamics.

Demenita

The dementia is technically called a sub-cortical dementia. Translated into real world terms this means that a person with Huntington's disease has difficulty performing a sequence of tasks, especially when distracted, while their ability to form new memory and to recall old memories is relatively well preserved. Thus a patient maybe able to do the wash if there is a list of instructions posted in the laundry room, but may fail at doing the wash if they are also trying to make a meal.
 
Distracting influences can impair the ability of a person with Huntington's disease to accomplish a task.

Distracting influences can impair the ability of a person with Huntington's disease to accomplish a task. For example, one may be able to eat easily in a quiet environment, but have great difficulty eating in a noisy, crowded room with both a television set and a radio playing.

Realistically evaluate what a person with Huntington's disease is capable of and what they are interested in doing. If they can no longer sort the clothes properly when doing the wash, perhaps they can still do the wash if someone else sorts the clothes (or wash everything in cold water).

As a person can do less and less for themselves, their sense of self worth may be lessened. Work to find tasks that the person is interested in doing and that they are capable of doing. They may not be able to paint as well as they used to, but they may still enjoy the act of painting.

Activities of everyday life, such as bathing, food preparation and other acts may become more difficult for them to accomplish. If these acts can be modified, the person can still maintain the feelings of accomplishment and independence that come with the ability to help themselves.

When confronted with an unwanted behavior, it is important to look at what the behavior represents and what it accomplishes.

the person may not be able to use speech to communicate. It is at this point that many obnoxious behaviors occur.

As Huntington's disease advances the ability to communicate diminishes, First there is slowing in the production of words. As words become more sparse, the content is still there, sometime stripped of pronouns and adjectives. Eventually the person may not be able to use speech to communicate. It is at this point that many obnoxious behaviors occur.

Example: a person spits out the food that they are given to eat. What are the possible reasons:

  • since they can no longer feed themselves:
    • their mouth is still full of the last bite of food
    • you are feeding them too fast
    • they are full
  • they can not chew the food
  • they want something else
  • they want a drink
  • they don't like the food
  • and so on.
Lets face it, canned peas taste pretty bad. Maybe they would like fresh peas instead.

In this case the behavior can convey many different meanings. Solving the behavior for the meaning can eliminate the problem.

Remember that someone with Huntington's disease is still a person.

Remember that someone with Huntington's disease is still a person. They may not be the same as they were several years ago, but they deserve to be treated with respect and understanding to help preserve the quality and dignity of their life.

Compromise Solutions

Sometimes the solution is to relax one's expectations. Another example, provided by Dr. Rubin, was a middle aged man with Huntington's disease who could feed himself, but preferred to be fed by an attendant. His rational was that it took such a long time to feed himself that he did not have time left over to go fishing, an activity that he enjoyed much more than feeding himself.