Helping Children & Teens Understand
The Disease

How Does The Disease Impact Children & Teens?

the disease has a big impact on family life, especially if the person with the disease is being cared for in the home. It is important to take the time to talk with children and teens so they understand what is happening to the person with the disease.

The degree to which children and teens are affected by the disease depends on who has the disease (a parent, grandparent, relative, or friend), how close they are to the person, and where that person lives (in the same home, nursing home, out-of-state, etc.) The impact of the disease is usually the greatest when a parent has the disease or when the person with the disease lives in the same home.

What Feelings May They Be Experiencing?

When someone in the family has the disease, children and teens oftentimes receive less attention, have their normal routine disrupted, and are involved in the caregiving responsibilities. Children and teens may experience a wide range of emotions. They may feel:

• sad about changes in a loved one's personality and behavior;
• confused about how people get the disease and why the person behaves differently;
• afraid of the behaviors the person with the disease exhibits;
• worried that they or their parents may develop the disease;
• angry and frustrated by the need to repeat activities or questions;
• guilty for getting angry or being short-tempered with the person;
• jealous and resentful because of the increased amount of time and attention that is given to the person with the disease;
• embarrassed to have friends or other visitors to the house.

What Are Common Reactions to The Disease?

Children and teens may exhibit their emotions in ways you may not easily recognize. It is important to watch for signs, such as changes in behavior, that will help you understand what they are feeling.

If they are having difficulties understanding the disease, they may:

• withdraw from or lose patience with the person with the disease;
• verbalize vague physical complaints such as a stomachache or headache;
• perform poorly in school;
• spend more time away from home;
• stop inviting friends to the house.

How Can Families Help Children & Teens Cope?

The most important way to help children and teens cope is to maintain open lines of communication.

Comfort and support them by offering the opportunity to express their feelings and let them know that what they are feeling is normal. Begin the education process early and encourage them to ask questions.

Always respond honestly and in terms that can be easily understood.

Questions You May Be Asked

• What is the disease?
• Why does Grandpa call me by my Dad's name?
• Will my mom get the disease, too?
• Why is Grandma acting differently?
• What are some things we can do together?
• Why does Grandma keep asking the same question?
• How can I help Grandpa?

What Activities Can Children and Teens Do with the Person with The Disease?

Activities can be a fun and simple way for children and teens to interact with the person who has the disease.

Doing basic chores, daily routine tasks and other activities together may provide a positive experience for both young people and the person with the disease.

People with the disease usually respond best to activities that are familiar and not too challenging. Make sure the tasks are comfortable and not too overwhelming for children and teens. For example, requesting children and teens to help with bathing and dressing may be an uncomfortable experience for them and the person with the disease.

Suggested activities:

• Walk around the yard or neighborhood;
• Fold laundry;
• Listen to music, dance or sing;
• Look at old photographs;
• Read a favorite book or newspaper;
• Watch movies;
• Keep a journal together.

What Help Is Available?

Despite the challenges, caring for someone who has the disease can be a positive experience when the entire family is educated about the disease and effective caregiving approaches.

the Association has publications, programs, and services that can provide education and support to your family. Please contact the Helpline at the Association of Our Town (314-432-3422, 1-800-980-9080, or e-mail Helpline) for more details.