Talking about a loved one’s diagnosis of dementia or Alzheimer’s disease is never easy. To see Mom, Grandpa, or a beloved friend deteriorate is painful and scary. Talking about the disease makes it feel permanent and real, and we may want to avoid that if necessary.
But if you have young children, they may be experiencing their own feelings of fear, confusion, and anxiety. They may wonder why Nana keeps forgetting their name, or feel scared when Grandpa goes missing in his pajamas. As their sick loved one declines, your children will become more and more anxious if they’re left in the dark.
Experts agree it’s best to be honest with your children early on. Here are some tips for when you’re ready to have this particular conversation:
1. Tell the truth, but follow the child’s lead.
Depending on the child’s age, you may not need to go too into detail about Grandma’s illness. Explain to the child that Grandma has an illness called dementia, which causes her to forget things and who she is. Be honest about the disease’s progression; don’t leave your child with the belief that Grandma will get better one day.
If you don’t know how much to divulge, let your child lead with the questions he or she may have. Answer them to the best of your knowledge, and don’t be afraid to say you don’t know the answer to something and will have to research it.
2. Prepare them for unexpected occurrences.
Dementia’s unpredictability can be confusing for children. Especially in the beginning, when the ill relative may have pockets of forgetfulness or irrationality mixed with longer periods of normalcy, the behavior might even seem staged.
Emphasize to your child that dementia manifests differently in each person, and there’s no way to know exactly what to expect. Compile a list of common dementia behaviors, such as agitation, hallucinations, depression, aggression, memory loss, and delusions, to share with your child.
3. Remind your child of the person they knew and loved.
Remind your child that Grandpa is still there beneath the dementia, and he deserves her love and respect even now. It will also help to remind them that the person can’t control their illness or behavior. You may want to brainstorm together with your child things they can do with their sick loved one. This can be watching cheerful videos together, listening to music, playing simple games, or doing crafts.
Use these tips to start the conversation with your child today.