Help Children and Teens Cope When a Loved One Has Alzheimer's

Young people need to understand dementia and share their feelings about it. These tips will help the entire family.

Alzheimer's disease can have a big impact on every member of the family, including children. Each child reacts differently to someone who has Alzheimer's. The young people in your life might have questions about what is happening. It's important for you to take the time to answer these questions openly and honestly.

How does a family member with dementia affect children and teens?

While adults dealing with members of the family suffering from Alzheimer's can experience devestating emotional trauma, how it affects your children may be different. If you think through the questions and feelings your children might have ahead of time, your conversations with them about Alzheimer's will go more smoothly and how they are feeling will seem more normal to them.

These factors may affect your child:

  • How the child is related to the person with dementia -- a parent,
  • grandparent, relative, friend
  • How close emotionally the child is to the person
  • Where the person lives -- in the same home, long-term care home, another state

Common -- and normal -- reactions of children and teens can include:

  • Sad about how the person with dementia is changing
  • Curious about how people get the disease
  • Confused about why the person acts differently or doesn't recognize them
  • Frustrated by the new things that must be done because of the disease's effects, like repeating words or phrases to the person
  • Guilty for getting angry with the person
  • Afraid of the different ways the person with dementia now acts
  • Jealous of the additional time and attention given to the person
  • Worried that they -- or other loved ones -- might also get Alzheimer's
  • Embarrassed to have friends or other visitors to the house if the person is there and acts strangely
  • Unsure how to act around the person with dementia

It might be difficult to recognize how your child is feeling. A child who is having a hard time understanding or accepting the disease might withdraw from or lose patience with the person, or express feeling physical pain, like a stomachache or headache. Schoolwork can suffer due to extra stress at home. The child or teen may spend more time away from home, or stop inviting friends to the house. If you notice a change in behavior, opening a dialogue will allow children to express feelings they aren't sure they should be having.

Often the whole family is learning about dementia together. Your child might not understand the disease. Encourage your child to ask questions. Answer honestly and in a way that is easy to understand. Use terms that match the child's level of understanding.

Teens' special issues

Dementia of a grandparent can bring many changes to your teen's life. Some teens in this situation say:

  • I don't like to talk about what's going on at home with my friends or my teachers
  • Sometimes I feel embarrassed about how my grandpa is acting
  • I don't feel comfortable having my friends over
  • When I help out with my uncle, I feel like my family really needs me
  • I feel good that I know how to do the little things that make a difference for my grandmother
  • I've never felt closer to my family than I do now because we're facing this together

Here are some questions your teen might ask. If you have answers ready, discussions about dementia can go more smoothly.

  • What is Alzheimer's disease?
  • Why are you acting differently?
  • Will Mom get Alzheimer's, too, like Dad?
  • Why does Grandpa call me by my dad's name?
  • Will Grandma die from Alzheimer's?
  • Why does she keep asking the same question?
  • How can I help Grandpa?
  • Is Grandpa going to get better?
  • Will I get Alzheimer's if I spend time with my aunt?
  • What are some things we can do together?

What you can do

When a family is dealing with a loved one who has Alzheimer's, these tips may help all of you cope:

» Keep open lines of communication. Good communication is the best way to help your child deal with the changes that are going on.

» Answer questions honestly. Respond simply to questions. Try not to sugar coat the message.

» Teach your child about the disease. Begin sharing information about the disease and its symptoms as soon as you can. Encourage your child to ask questions. Be patient and use words that are easy to understand. Reassure the child that just because a person in the family has Alzheimer's, it does not mean that your child or other family members will definitely get the disease.

» Encourage your child to create and decorate a "memory box." Your child has special memories about favorite times shared with the person with dementia. Fill this box with things that will be a reminder of those special times.

» Make sure your child is getting enough support. Set aside a regular time to be with each other. Activities or outings together can create great opportunities for a child to open up.

» Prepare the child for changes. Alzheimer's gets worse over time. A person with dementia may look healthy on the outside, but on the inside, the brain is not working properly. Let the child know what changes to expect. Talk about what those changes will mean for your child and your family. Make sure your child understands why you might have less time to spend together.

» Let the child know it's not at fault. Dementia can cause a person to direct confusion, fear or anger at the child. If this happens, be sure the child knows the person did not mean to act that way. People with dementia have good days and bad days. Make sure your child does not feel responsible for the kind of day it is. People who help care for the person with dementia can sometimes seem tired, frustrated, sad or short-tempered.

» Inform your child's teacher and school counselor. Let them know the ways in which Alzheimer's disease is affecting your child and the family.

Hope ahead

Great strides are being made in scientific research on Alzheimer's. Let children know that better treatments, or even a cure could be discovered by the time they grow up. If a child would find comfort in learning more about the disease and how the brain works, contact the Alzheimer's Association for more information. If your child expresses feelings of helplessness, work together to find a way to get involved. For ideas, contact your local Alzheimer's Association.

Tracy Mobley
Camp Building Bridges is a respite camp for young teens that have a parent/grandparent with Early Onset Dementia. Please visit the camp website. Thanks, Tracy (younghope)
Agatha Smith
I think it is a very valuable advice to teach kids about the disease. Sometime we make a mistake of thinking that kids have a <a href="">whole life</a> ahead to learn about diseases and consequences, we are trying to protect them by hiding the information. In fact, uncertainty and lack of knowledge is the main cause of fear in kids and adults alike.