How to Talk to Children About Alzheimer’s Disease

How to Talk to Children About Alzheimer’s Disease

According to the Alzheimer Association, someone in the United State develops Alzheimer’s disease every 65 seconds. Approximately 5.7 million Americans lived with this disease in 2018, and experts believe the diagnosis will become even more prevalent in the future.

Alzheimer’s disease is a diagnosis nobody wants, yet it’s one of the most common diseases in the United States. Without a doubt, when someone is diagnosed with Alzheimer’s disease, everyone in the family—including kids—is affected.

Alzheimer’s disease is hard for anyone to understand or accept, which is why it can be an extremely difficult conversation to have with our kids. What do we say? What do we tell them (or not tell them)? While there are no easy answers, there are some strategies that could make the conversations easier for everyone involved. Here are 8 ideas along with helpful conversation starters.

Don’t delay.

It can be easy to delay hard conversations, especially with our kids. Nobody wants to tell children that their family member is sick, and it can be particularly difficult if you—as the adult—are struggling with your own thoughts or emotions on the subject. However, children are generally better than we think at sensing and responding to stress in the family, and they can begin to handle that stress in negative ways if they are kept in the dark about what’s going on.

Adults can inadvertently show their stress or sadness in a variety of ways that are perceptible to a child. They may hear you talking in quiet, urgent tones with your partner or see you cry or take out your own stress in an unusual way. They may overhear parts of your conversations on the phone. If this occurs when they do not know what is going on, they may try to piece things together themselves and come to incorrect or scary conclusions.

The smartest strategy is to talk to your children about what’s happening as soon as possible. If you show emotion as you talk to them, that’s OK. It’ll give them permission to show their true emotions as well.

The conversation with your children could begin like this:

“[Your family member’s name] is sick with something called ‘Alzheimer’s disease.’ What this means is that [he/she] may not always remember things or be able to say or do things like [he/she] has in the past. Nothing has changed about how much we love [him/her] or how much we’ll try to take care of [him/her].”

Keep it simple.

Explain in terms that your children can understand what Alzheimer’s disease is (a disease of the brain), how it progresses over time (it can slowly get worse), and how one might be expected to change (they may not act, look or sound like themselves). The parts of the brain that are most often affected by Alzheimer’s disease include language, memory and thinking skills.

Explain that they may have good days and bad days and that it’s OK to ask hard questions.

The conversation with your children could begin like this:

“Alzheimer’s disease is a sickness inside the brain. Just like other parts of the body can get sick—like the stomach or the throat—the brain can become sick, too.”

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Be reassuring.

Universally speaking, children want to feel loved and know they are safe. Having a conversation about Alzheimer’s can make children feel nervous or insecure in different ways. Especially as the disease progresses, your children may have additional questions. Some of the questions they may (or may not) ask out loud include:

  • Why doesn’t [he/she] recognize me anymore?
  • Is [he/she] angry with me?
  • Will it get better?
  • What will happen next?
  • Could this happen to me?

Just because your family member has Alzheimer’s disease does not mean they have forgotten the love that was shared in their relationships. Many times—long after the brain has forgotten information or data—it has retained feelings.

It’s also possible that he or she might say or do things that are unusual. These behaviors can cause a child to feel rejected—especially if one doesn’t react the way he or she has responded to your children in the past. If your children witness your family member losing their temper or being unkind, remind them it is the disease causing them to act differently. Let your children know it’s OK for them to feel sad about the behaviors or the changes that they see. Also remind them on an ongoing basis that it isn’t personal or directed at them; even though it may feel that way.

The conversation with your children could begin like this:

“You and I both know how very much [your family member] has always loved you. Now that [your family member] is sick, [he/she] can’t talk or act the way [he/she] wants to, and I know [he/she] would be really sad to know [he/she] said or did something to make you feel bad. This is the disease making [him/her] act this way. You are still loved.”

Tell the truth.

It can be easy to shield our children from hard conversations in a genuine effort to protect them. However, Alzheimer’s disease is complicated and doesn’t always come with easy or pretty answers. When we tell our children the truth—even if it means answering a question with, “I don’t know” when we don’t have the answers—it builds trust. Trust is also built when children know they can rely on us to be honest with them, even when the answers are painful.

Shielding our kids can create mistrust in the future. It always pays to be sincere and truthful—even when it creates discomfort for us. With that said, the truth can still be given in an age-appropriate, considerate way. One way we can practice telling our children the truth—and encouraging them to do the same—is by telling them how we feel about the situation.

The conversation with your children could begin like this:

I love [your family member] very much and am sad that [he/she] has Alzheimer’s disease. When I heard the news, this is how I felt and responded …”

Practice patience.

Your children may respond to news that a family member is sick in an unpredictable way. Especially if your children are close to the person who is sick; they may need time and space to grapple with the news before talking about it logically with you. They may not even recognize how they feel about the news at first, so pushing for a response could be unhelpful or frustrating for everyone involved.

Here are some potential responses your child may have to the news:

  • Children may return to laughing and playing immediately after hearing the news as if they are unaffected by it
  • Children who are generally well-behaved may start acting out
  • Children who typically verbalize things may grow quiet or distant
  • Children may start complaining of physical ailments such as a headache or stomach ache

The best response to whatever your children say or do after receiving difficult news is to offer love and patience. If your children seem to struggle in a prolonged way (either by acting out or living in denial), spend a day together one-on-one if possible and do a familiar, enjoyable activity to see if your child brings up the diagnosis and wants to talk about it.

The conversation with your children could begin like this: 

“You may not be ready to talk about what’s happening with [your family member], but when you are, I want you to know that I am here for you and will listen to whatever you want to say.”

Don’t force an unnatural response.

If your family member has already started to noticeably change, your children may be nervous to say or do things they once did. Giving hugs and kisses, for example, or having conversations with them about school or sports might be uncomfortable while they wrap their minds around such big and devastating news. You remember what it was like when you heard the news that your family member has Alzheimer’s disease—your children need time to come to terms with it, too.

Don’t force uncomfortable interactions between your children and your family member while your children process it. The more space you give your kids, the more likely they will come around on their own terms and reach out to your family member in their own way.

One idea is to find new ways to connect with your family member who has Alzheimer’s.

  • If your family member can’t talk on the phone any more, encourage your child to make a card or write a letter
  • Frame a favorite photo of your child with them and place it where your child will see it and be comforted by it
  • Talk about fun memories and make new ones

The conversation with your children could begin like this: 

“I would love for you to come with me when I visit [your family member], but I want you to tell me if anything makes you feel uncomfortable.”

Use helpful resources.

One helpful resource you might consider is a friend, teacher, spiritual leader, physician or family member who has a trusted relationship with your children.

Sometimes it helps for children to talk to another adult and hear the same responses from someone else that you have given. Also, children are often able to verbalize things to another adult that they don’t want to share with you, mainly because they don’t want to hurt you. Maybe your children are angry about the diagnosis, or maybe they are mad at the person who is sick. If they’re afraid to tell you those things—for fear it would cause you pain—they might harbor those unhealthy thoughts or feelings for a long time.

If any of your children are in school, consider making their teachers aware of the situation so that they can better understand what your child is feeling and facing in the classroom. Teachers can show more patience and be more encouraging if they know what your children are experiencing at home. Also, they may be able to be another ear if your child wants to discuss it.

Thankfully, you aren’t alone when it comes to discussing Alzheimer’s disease with your children. Many helpful books, films and pamphlets have been created to help assist you. Here are a few ideas:

Give yourself grace.

Chances are, if your children are struggling with the new or difficult Alzheimer’s diagnosis of someone you love, so are you. Don’t put pressure on yourself to have all the answers. You love your kids, they know it, and you will get through this together, one day at a time.

Here at Tessera of Brandon, we want to encourage you however we can.

We believe in celebrating the individual strengths of each person who lives in our assisted living and memory care community. And every day, in ways big and small, we seek to create an engaging senior living community of individuals, always honoring their legacy, embracing their wellness and respecting their personal goals.

If you or someone you love are looking for an assisted living or memory care community to call home, we’d love to meet you and show you around. We’re proud of the community we’ve built, and we’d love for you to consider being a part of it. Newly constructed and opened in 2018 here in Brandon, FL, Tessera of Brandon is fresh, modern and designed to support your well-being. Our apartments allow for maximum independence and the community spaces help keep everyone connected and engaged with options for outdoor dining and places to gather like our library and event center.

Come see for yourself! Stop by, contact us online or give us a call today.

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