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Huntington's Disease Youth Organization

Do people with HD know what's happening?

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

Q. For the people who have Huntington’s Disease and are sick, do they know what’s happening to them and they’re just not able to talk back or do they not know what’s happening around them?

Karen, Teen, USA

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A. Hi Karen

Thanks for that question which is really difficult to answer. We normally judge how people are by what they say so it’s hard when they aren’t speaking. Here are my general rules;

  1. I think most people with HD at this stage understand and remember a lot more than you would first think.
  2. They will often remember a lot. So if you talk about something that happened, it’s fairly likely that they will be able to remember it on some level
  3. Generally, I think they would have some understanding of the physical world around them. However, they may find it hard to understand the world in the same ways. For instance, if a person were confined to a bed in a care home, that’s a situation that has a general meaning and says something about how the future might look. It may be that a person with HD at that stage would know that they were in a bed and looked after by nurses, but not really understand exactly what that meant in terms of the future. Also, some people with HD at this stage might not be able to pick up on more subtle things like emotional cues and irony. They would also probably find it more difficult to take on lots of information at once.

So when you are with that person, take your time. People with HD may be able to communicate even if they can’t say much. Some people can work well with communication boards so they can say what’s going on for them without speaking.

Finally, remember that everyone with HD is different, so it’s a good idea to test out a few things and see what works.

Hope that’s been helpful

Best wishes

Hugh