Explaining Alzheimer’s to Children and Teens

Making sense of a senseless disease is hard enough for adults. Here are suggestions for helping your teens and children cope.

Most people are aware that Alzheimer’s disease can be difficult for families. But, are you aware of how especially troubling it can be for children and teens when a loved one is diagnosed?

When I was in seventh grade, my grandfather, Robert L. Landis, began showing signs of Alzheimer’s. In the middle of 10th grade, he passed away.

My grandfather was a father figure to me, but my family didn’t know how to talk about his illness and how it impacted us, and we didn’t seek the help of a therapist or medical professional who could have helped us navigate such an emotional and complex family matter. So what I did instead was what any troubled teenager would do: I lashed out. I got into arguments with my grandmother and I started hanging out with the wrong crowds and unsurprisingly, I got myself into a lot of trouble. Eventually, I forgot all about my grandfather and how he raised me.

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It took me a decade of self-reflection to figure out why I was so miserable when my life wasn’t going as planned. Once I figured it out, I saw it was because my grandfather forgot who I was, so I tried to forget who he was too. Not being properly equipped to deal with a loved one who is diagnosed with Alzheimer’s can have a lasting effect. For me, it caused a decade of heartbreak and turmoil in my life.

Understanding my emotions and feelings of loss during those formative years has allowed me to turn my life around. If I had had open communication and therapy as a teen, I would’ve potentially been saved from years of emotional instability and sadness.

Helena Chang Chui, MD with the USC Memory and Aging Center at Keck Medicine of USC, is an internationally recognized Alzheimer’s disease expert who helped us understand how to explain Alzheimer’s disease to children and teens.

Like adults, children and teens will experience a flood of emotions when a loved one is diagnosed with Alzheimer’s disease or any other dementia. Common feelings include:

  • Sadness
  • Confusion
  • Anxiety, especially about what will happen to the person and what it means for them personally
  • Angry that they have to deal with life’s uncertainty
  • Resentment
  • Guilty when they are impatient with the person
  • Embarrassed, especially when friends are around

Other reactions are subtle. A good student may start making bad grades. They may pull away from family, rarely have friends over and spend more time away from the house. At times, they may complain of illness, either brought on by worry or from fear of having a disease themselves.

All of these emotions are normal. The lifeline, according to teens that have experience dealing with Alzheimer’s in their family, is for parents and loved ones to keep communication open and provide unconditional support that teens and children need – which can differ from what parents think they need.

5 Ways to Help Kids Cope

  • Talk, talk, talk. Be open and upfront when needed. Answer questions honestly with gentleness and empathy. If you refuse to discuss the disease, it creates a tense environment for all involved.
  • Listen, listen, listen. Know when to shut up and let your child talk. Or not. Knowing they can vent to you in a safe, nonjudgmental environmental can be cathartic.
  • Let them know that the roller coaster of emotions they are experiencing is normal.
  • Double-down as a family. Continue doing activities together. The more normal the better, but also be willing to alter your get-togethers and create new activities if it allows the person with Alzheimer’s to participate.
  • Encourage journaling. Writing is a good outlet for feelings.

Resources for Kids

Educating your child about Alzheimer’s makes the disease less scary. The Alzheimer’s Association has a series of videos for children and teens available online as well as resources for parents and teachers.

There is also a listening hotline (800-272-3900) for anyone who needs support, or you can join an online community. Alzheimer’s | Greater Los Angeles has a 24/7 hotline (844- 435-7259) and website for Southern California resources. Your family doctor and health care providers can also provide you with contacts in your area that specialize in helping children and teens deal with traumatic life changes.

If you are in the Los Angeles area and need help from some of the top Alzheimer’s specialists in the world, schedule an appointment by calling (800) USC-CARE (800-872-2273) or by visiting neuro.keckmedicine.org/request-an-appointment.

By Leonard Kim