If you or a loved one are currently impacted by Alzheimer’s disease or another form of dementia, you are not alone! More than 5 million Americans and 78 million people worldwide are living with Alzheimer’s disease, not to mention the various other types of dementia. This illness has a profound impact on family relationships. Younger family members may not always receive the attention they need. They may even struggle in understanding what is happening to their loved one.
When a child is faced with the chronic illness of a loved one they may experience a wide range of emotions. These emotions range from feelings of loss, feeling guilty they did something wrong to make their loved one ill, or even fear they too will become sick. A child may need help expressing or identifying how they feel about their loved one’s illness.
The symptoms of Alzheimer’s disease affect how individuals respond to their environment. Due to the unpredictability of how these symptoms manifest, some families choose to exclude children from events they were once part of. When a child is excluded from family events they may feel sad, angry, abandoned, scared or that something is wrong with them. While the symptoms of Alzheimer’s disease may create some unpredictability, explaining dementia to a child in a gentle, age appropriate manner will prepare them for a positive visit with their loved one. Providing education allows the child to be included in family events. The eventual outcome for the child will be improved feelings of safety and security while enjoying a continued relationship with their loved one living with dementia.
Beginning the Conversation:
For young children, the easiest way to begin the conversation is to use a good book with pictures on the topic. There are many books available and more than one may be necessary to help find the one your child identifies with the most. Grandma and Me: A Kid’s Guide for Alzheimer’s and Dementia is an excellent resource.
For older children, begin the conversation by asking first what they already know about Alzheimer’s disease. You may find in doing this they have picked up “bits and pieces” of what is “true and not true” that need to be re-visited. There are some excellent videos available from the Alzheimer’s Society to assist when explaining Alzheimer’s disease to older children and teens. http://www.alz.org/living_with_alzheimers_just_for_kids_and_teens.asp
Regardless of age, it is important to explain the changes seen in their loved one is caused by a physical illness in their brain. When something happens that is unusual or different than how their loved one uses to respond to them, it is not because of the child. It did not occur because their loved one meant to be different. Help the child understand how the illness affects their loved one’s brain. The symptoms of Alzheimer’s disease includes not being able to remember things, acting differently than before they were ill, and being sad sometimes or feeling upset.
Another way to help children understand is to compare the illness of Alzheimer’s to what it is like when we get a cold or have the flu. Explain how when we have a cold or flu, we have “symptoms” like a cough or fever. When someone has Alzheimer’s disease, they have symptoms like memory loss and how they act at certain times. The good news is that with Alzheimer’s disease, you can not catch it when you hug or kiss them.
Verify Understanding:
When explaining a serious illness like Alzheimer’s disease to a child be sure to ask them how they feel about the illness, about their loved one, and ask if they have any questions. Often children seem to understand without asking questions. You may think this is because you did such a great job explaining, no further conversation is needed. That is rarely the case! This is a difficult topic even for adults. Children may struggle to put into words all of the thoughts in their young minds when conversations begin. A few key questions to ensure good communication would be:
1. Tell me what you think Alzheimer’s disease is? What is happening in Grandma’s brain?
2. How do you feel about what is happening to Grandma? (Be sure to address any feelings expressed, assuring your child they are safe, loved and they have done nothing wrong)
3. Are there any questions you would like to ask about Alzheimer’s disease?
One of the best ways to help children understand Alzheimer’s disease and dementia is to include them in the care journey. Children have a natural ability to communicate and participate in activities that persons living with dementia enjoy. Singing, painting, art projects, telling stories, reading, playing cards or just visiting together are a few examples of fun inter-generational activities to try. As long as both the child and the person with dementia are enjoying the activity, it is a good one!
Last but certainly not least, always be open, honest and kind as you talk to your child. Remember, they may ask the same question multiple times before assurance and understanding is accomplished.
