Helping Children Understand CJD

Watching a loved one progress through the stages of CJD can be frightening can be difficult and frightening for a child.

Discuss CJD with your child, but remember that discussing means both talking and listening - and listening may be the most valuable part of the conversation.

• When your child asks questions, respond with simple, honest answers. Don't be afraid to say "I don't know" and then offer to try to find out.
• Explain that CJD is a disease. Just as children get colds and earaches, older adults can get illnesses that cause them to act differently, forget things and lose the ability to speak.
• Focus on the things that your loved one can still do, as well as those that are becoming more difficult.
• Be patient. You may need to repeat explanations on multiple occasions, depending on the age of the child.
• Reassure your child that he or she is loved — no matter what.
• Don't be afraid to use humor. It often helps if you can laugh about the situation together.
• If your child doesn’t talk about the situation or withdraws from your loved one, ask what changes your child has noticed in your family member with CJD. Your child's observations may lead naturally to an exploration of his or her own feelings and worries. Assure your child it's okay to feel nervous, sad or angry.
• Help your child stay connected to the person with CJD by involving them in familiar activities, such as setting the table together. Even young children can stay connected with a relative by paging through photo albums or listening to music together.
• If your child becomes impatient with your loved one, reiterate that the behavior isn't intentional — it's a result of the disease.