Alzheimer's is an individual's challenge, but becomes a family's journey. If you're planning on having a discussion with your child about grandma, grandpa, or another loved one with Alzheimer's, it is important to have a plan to explain a few kid-friendly facts about Alzheimer's, and what to expect. The ways that your loved one will change with Alzheimer's can be frightening in childhood. So, approach your child with open and honest information that aligns with your child's age, relationship, and how he or she can help.
Alzheimer's Facts For Your Child, and How To Share Them:
A change such as a family member receiving a diagnosis of Alzheimer's can be stressful during childhood, but children cope better learning more about these changes. Explain to your child that Alzheimer's is a condition affecting a person's thinking, memory, and judgment. Here is another article I wrote about some key definitions and facts about Alzheimer's.
For children, you might explain that the person looks the same on the outside but their brains and memories are changing inside. Tell them this condition causes someone to act differently, and the person will have good and bad days. As the stages of Alzheimer's progress, people eventually forget who they are, who they were, and the people around them.
Prepare for your child's questions. For children who want more details, be concrete and use comparisons for difficult concepts such as changes in behavior. When the person with Alzheimer's feels threatened, she will act out. Think about this Alzheimer's behavior from a childhood perspective: ask your child to remember how he felt at a time he was lost and didn't recognize anyone. Let your child know what to expect using pictures or books About Alzheimer's for children when explaining Alzheimer's. Videos like "Grandpa Do You Know Who I Am?" help convey information from a child's perspective as well. Always review material first to ensure it's appropriate for your child.
Explain how the person with Alzheimer's slowly withdraws from the world and from people close to them—not because they don't care, but because they lose the ability to remember. People with Alzheimer's lose recent memories first and retain older memories longer—that's the reason why they may remember an older sibling but not a younger child.
Changes In Relationships & How To Explain It To Your Child:
Relationships going forward depend upon past relationships. These prior relationships serve as anchors to explain the differences in moods and behaviors. Does the person with Alzheimer's live with, or see, the child often? Is the child too young to have any memory of the person? Is the child a teenager with many past memories?
Children need to understand that at some point, the person with Alzheimer's will not recognize them. Children may think they did something wrong or may ask, "Doesn't grandma love me anymore?"
It is confusing when actions and words no longer match a familiar face; let them know the person with Alzheimer's loves them and knows they are there. If the person with Alzheimer's accuses your child of wrongdoing, such as losing an item, let your child know it is okay to feel sad or get angry, and it is not their fault. If the person with Alzheimer's becomes angry or frustrated, they may express this through curse words or inappropriate language. The ability to manage such outbursts may not be possible, and your child should be warned that this is possible behavior. These types of behavior may scare children, and they often blame themselves for the actions they don't understand. They should be made aware that this is normal for people with Alzheimer's.
A "How Can I Help" Approach (Child Can Do):
Children want to help. If the person with Alzheimer's enjoyed art, music, gardening or other activities, these memories remain. Let your child engage and demonstrate ways to step into the person with Alzheimer's world. Activities such as singing together, assembling puzzles, or simple yard work are things they can do together. This sharing of activities often helps children feel better and provides ways for them to contribute.
For the person with Alzheimer's, while memories continue to recede, the person remains a vital part of the family and circle of friends. Use a variety of approaches to provide accurate information, reduce fears around certain behaviors, and help your child continue to engage and maintain a relationship. Take advantage of existing resources when it's your time to explain what Alzheimer's is to children.
(Editor's Note: If you're interested in hearing on childhood and Alzheimer's from a caregiver's perspective with her son, read this community story by Ansley Ward.)