What is dementia? How do I explain it to my young child?

Photo by Mikhail Nilov

If you have an aging parent or grandparent who has been diagnosed with dementia, you may already be familiar with the changes and challenges that come with it. But even if you, yourself, are well-versed in it, it can still be confusing to navigate how to explain these changes to your young children.

Dementia can be confusing enough for adults, so it makes sense that young children might have an especially hard time understanding why Grandma or Grandpa is acting so different. Maybe they’ve noticed their grandparent forgetting things more often, struggling to find the right words, or getting upset for no clear reason. 

Since I work with both children and caregivers in the sandwich generation, I often help families have these conversations in a way that makes sense for young children, while also helping the adults process their own emotions about it.

In this month’s blog, I’ll go over what dementia is, the different types, and a few ways to explain it to a child in a way that feels honest, but comforting and age-appropriate.

What is dementia, exactly?

Dementia isn’t just one single disease — it’s actually an umbrella term that refers to different conditions that affect a person’s memory, thinking, and ability to do everyday tasks. It’s caused by damage to brain cells, which makes it harder for the brain to work the way it used to. Scientists are still studying why, exactly, some people get dementia while others don’t.

One of the most common misconceptions about dementia is that it’s “just forgetfulness” or a normal part of aging. But it’s more than that. While everyone forgets things sometimes, dementia affects a person’s ability to function in the day to day.

Some of the common signs of dementia include:

• Forgetting important things, like names, dates, or events

• Asking the same question over and over

• Struggling to find the right words when speaking

• Getting confused about time, places, or even people

• Having trouble completing familiar tasks, like cooking or using a phone

• Changes in mood or personality, such as becoming more anxious, irritable, or withdrawn when they weren’t that way before

Not all people with dementia experience the same symptoms or progress at the same rate. But over time, dementia can make it harder for a person to take care of themselves, which is why so many adult children find themselves needing to step into the role of caregiver for a parent.

Types of dementia

There are several different types of dementia, and each of them affects the brain in different ways. The most common types include:

• Alzheimer’s disease: You’ve probably heard of Alzheimer’s, which is the most common type of dementia and responsible for up to 70% of all dementia cases. It affects people’s memory, thinking, and behavior. The first signs are usually mild forgetfulness, but it gets worse over time.

• Vascular dementia: This type of dementia is caused by reduced blood flow to the brain, usually after a stroke. 

• Lewy body dementia: This is the second most common type of dementia. It involves abnormal protein deposits in the brain. It can cause visual hallucinations, sleep disorder, and changes in movement like tremors or rigidity.

• Frontotemporal dementia (FTD): FTD affects the front and side parts of the brain, which can lead to personality changes, trouble with language, and sometimes inappropriate social behaviors.

How to explain dementia to a child

If your child is around their grandparent or another loved one with dementia, they’re probably already picking up on the changes, even if they don’t say anything about it. Children are incredibly observant! And when they notice that something is “off,” they may start coming to their own conclusions — which may or may not be accurate.

This is why having an open and honest conversation about dementia is so important. It gives your child a chance to process what’s happening and ask questions instead of feeling confused or even scared by the changes they’re seeing in the person they love.

Here are some tips on how to explain dementia to a young child in a way they can understand.

Keep it simple and clear

Young children don’t need a long, complicated explanation about brain cells and medical terminology. Instead, try keeping it simple and explain it to them in terms they can understand.

For example, you might say: "Grandpa has an illness called dementia. It makes it harder for his brain to remember things and do some of the things he used to do. So if he forgets our names or asks the same question a lot, it’s not because he doesn’t love us — it’s just because his brain is having trouble working the way it used to."

This helps them understand that dementia is an illness, not something their loved one is doing on purpose.

Use comparisons they can relate to 

Sometimes, using metaphors of things your child is more familiar with can help make dementia more understandable and feel less scary.

One way you can try to explain it to kids is like this: "You know how when a toy’s batteries start running out, it doesn’t work the same way? Maybe it moves slower or doesn’t light up the way it used to. That’s kind of like what’s happening to Grandma’s brain. Her brain isn’t working as well as it used to, so sometimes she forgets things or gets confused."

Reassure them that it’s not their fault

​Young children are naturally egocentric, meaning they tend to see the world as revolving around them. Because of this, they may start wondering if they caused their grandparent’s confusion or frustration in some way.

It’s so important that they know that this is absolutely not their fault. You can reassure them by saying something like: "Dementia is something that happens all on its own. It’s not because of anything you did or said. And even if Grandpa gets upset or confused sometimes, it’s not because of you — it’s just because his brain is having a hard time."

Encourage them to ask questions

Children process things at their own pace. Sometimes, they’ll ask questions right away. Other times, they might wait until later when they’ve had more time to think about it.

Let them know it’s okay to ask questions whenever they need to. And when they do have questions, try to respond to them as accurately as you can. Be prepared: this might lead to bigger questions about life and death.

Help them find ways to connect

​Even if Grandma/Grandpa isn’t the same as they used to be, children can still build meaningful connections with them. You can encourage this by finding activities they can do together, such as:

• Looking at old family photos

• Singing familiar songs together

• Doing simple crafts or coloring

• Reading their favorite book

• Giving hugs or holding hands if the grandparent is comfortable with touch

• Watching a favorite television program 

Letting children know that their loved one still enjoys their company, even if they act differently, can help them feel more at ease.

Don't forget about Yourself

Lastly, let’s not forget about you! Having to explain to a child that someone they love, which more than likely is someone you love, is changing, can be a tough pill to swallow. Be sure to give yourself time to process what various conflicting emotions you are likely to have.

And, if you need some guidance on how to talk to your child about difficult topics, then be sure to check out my Parent recording - where I talk about just that. Learning how a young child sees the world and processes things based on their age can definitely help prepare you for how much you should and should not say. 

Therapy for children and parents

If your child is struggling with the changes they’re seeing in a loved one, or if you are having a hard time balancing it all, I’m always here to help. We can work together to either help your child understand and cope with what they’re experiencing or you and I can work together to process the feelings you may be having related to seeing your parent change. You don’t have to do it alone. Feel free to contact me when you are ready. 

As always, thank you so much for reading!

Christine M. Valentín is a Registered Play Therapist™ who helps children 3-8 reduce their tantrums, Parents- improve their parenting skills and Adults - reduce their worry about an aging parent. As a Latina therapist, with 15 years of private practice experience, Christine loves helping people become a more confident version of themselves and develop better relationships within their family. To read her other blog posts, click here. Christine is also passionate about educating parents and mental health professionals. To learn about upcoming workshops and parent educational recordings, click here.