One of the most common questions I am asked is "How do we tell the grandchildren about Mom's dementia diagnosis?" It is estimated we currently have 3 million teens and pre-teens helping as direct family caregivers in our country alone. Talking to them about what dementia is and what it is doing to their loved one is a critical part of helping them to cope with the burden of care.
Explaing dementia to children is not easy, after all dementia is a terminal disease and obviously affecting someome they love. Here are some of the "Do's and Don't's" related to the age of your grandchildren.
Do: Just try to keep the information on their level. Young children don't have the ability to process illness and disease. This means saying things like "Gran has a sick brain," or "Gran may not remember your name sometimes."
Don't: Try to avoid saying "Gran is sick" as children can draw inferences from that information. In other words, everybody, including children, gets sick. It's better that the children understand Gran's behaviors or changes are because of a "sick brain." It helps them begin to make the step to understanding she has a specific illness.
Do: You will probably need to repeat the information several times as younger children live in the "here and now."
Don't: Pretend to know everything. Don't be afraid to admit you may not know all the answers. Children need to feel secure and safe. As long as you can be calm, the kids will probably be okay. Remember, children, even preschoolers, can be quite direct with their questions and they expect answers. Don't make anything up, but try to be honest. Pre-schoolers don't need a lot of detail, they just need an answer.
Do: Remember it's okay to be sad and to tell this age group you are sad about Gran's sick brain. Chances are they are already aware people in the family are sad. Talking about it helps them adjust to these new feelings in the family.
Do: Be sure to tell them Gran's sick brain is not their fault. Children, both pre-schoolers and pre-teens, can take on a burden of guilt and feel like their behavior may have caused Gran's brain to be sick.
Do: Be sure to tell them that sometimes a sick brain can make Gran do things that seem silly or odd. She may forget their names or her manners or say something out of character. Or she may appear to be upset or lost at times. Remind them these things are because of her sick brain and not because of them.
School Age and Pre-Teens
This age group is quie capable of understanding complex feelings and events, but they will still need your guidance.
Do: Be prepared for discussions. Eight and nine year old children can process that dementia is a terminal disease and what that means. They can understand illness and death. They may ask detailed questions about the disease progression. And because they are more likely to have a literal thinking process, they may ask painfully frank questions. "Is Gran going to die?" "Does she hate me?" "Is she sick because I was bad?"
Do: Watch for signs they are suffering emotionally and physically. Stomach aches, headaches, withdrawn or depressed behavior, strange aches and pains, or bad dreams are not uncommon. Let the teacher know about Gran if schoolwork suffers or seek additional support for your child.
Don't: Pretending nothing is wrong when the children are around can have serious negative impacts on them. Dementia affects the family cycle and it's dynamics. Keeping information secret can lead children to believe they are somehow responsible for changes.
This can be a challenging group. A child that has been very close to Gran may withdraw or be easily hurt by changes in her behavior. At times, teenagers may appear uncaring or refuse to visit. The perception of appearing not to care may be related more to what is occurring with the teenager -- school, hormones, physical changes, etc. Or the teenager may be overwhelmed at the thought of losing Gran or seeing declines and changes in Gran's abilitites.
Teenagers can also be easily embarrassed. They may be afraid of experiencing or exhibiting emotion about Gran's dementia. They may be unable to talk about their feelings or fears.
Do: Offer to be available to talk about what is happening to Gran.
Don't: Trying to force teenagers to respond may only push them farther away.
Do: Allow teenagers time to adjust to the announcement of Gran's dementia.Don't: Everyone gets frustrated. Some people experience this as anger. Don't tell your teenager to stop having his or her feelings. After all, a dementia diagnosis starts the process of grieving and remember, all of us, regardless of our age, grieve differently.