How To Talk To Your Kid About Their Loved One’s Alzheimer’s Diagnosis

Alzheimer’s disease is a degenerative brain condition that can cause lots of different symptoms, including memory loss, confusion, and changes in mood. If you have a family member living with Alzheimer’s and a kid who loves them, you’re probably facing the overwhelming task of trying to help your child understand what’s happening to their loved one. So, how do you explain Alzheimer’s to a child? You already know the conversation won’t be easy, but with some expert insight, you can go into it feeling prepared.

How to explain Alzheimer’s to your child

First things first: go into this first conversation knowing it may not unfold exactly how you expect, and it will probably not be the last one you have on the subject.

“Two things are true: our kids are capable and deserving of conversations about hard topics, and these conversations are not easy to have,” says Dr. Paige Naylor, Ph.D., pediatric clinical neuropsychologist at Children’s Hospital Colorado. “It’s OK if the initial conversation does not seem to go well, or if kids don’t seem as engaged as parents expect. This may be because the information is developmentally too complicated for kids to understand, or that they are processing it. Hard topics are not typically resolved or totally addressed in one conversation, and the best thing we can do as parents is to be open to questions from our kids later on.”

With that in mind, think about exactly what information your child needs in order to understand the situation, says Dr. Karen Sandbach, Ph.D., a lifespan neuropsychologist at Baptist Health and Wolfson Children’s Outpatient Behavioral Health. For example, if they’re going to see Grandma for the first time in a while, what might they notice is different about her, or that she struggles with?

“Be specific about what the difficulties are that they’re likely to see. With Alzheimer’s disease memory is the primary difficulty, but there are other cognitive difficulties as well, like saying things that this person wouldn’t typically say or using language they wouldn’t typically use. When people have difficulty remembering, they can get angry easily because they’re confused and scared. So those are some really overt things that a child may see,” Sandbach says.

Explain those changes in just a sentence or two, Sandbach explains, and then wait to see what questions your child asks. Letting them take in little bits of information at a time, and guide the conversation toward what matters to them, will help their understanding. And once you’ve pointed out the differences your child might see in their grandparent, explain what everyone else is doing to help her.

“It’s really key to have this statement about what’s the difficulty, what are we doing to help?” says Sandbach. “For example, ‘Grandpa may be helping Grandma more with things when we’re there this year.’ Sometimes there’s a caregiver coming in, so prepare the child that there would be someone there that they don’t know and that this person’s there to help that loved one.”

Use age-appropriate explanations.

Here’s how the experts recommend you broach the subject of Alzheimer’s with kids at every age, including examples and common questions your child might have. Kids who are neurodivergent or who have anxiety may not fit neatly into these age-based categories, Naylor says, so consider your child’s individual level of understanding.

Preschool-aged children

Kids this young don’t yet understand things like serious illness and death, Naylor explains, so stick to the basics and specific examples. Try something like this: “Grandma has something called Alzheimer’s disease. This means that she has trouble remembering things sometimes.” If the person has had to move to assisted living, or there are other changes to how or where you’d normally visit them, prep your little one for that too. You could also read a book together that covers some of the more abstract parts of memory loss (Naylor recommends The Remember Balloons by Jessie Oliveros).

One important note: steer clear of describing your loved one as “sick.” Kids this age tend to associate the word with being contagious, like the kind of sickness they’d get at school, and may not understand that they can’t catch Alzheimer’s from their family member, Naylor says.

5-7-year-olds

Children begin to understand the concepts of illness and death more around the age of 5 or 6, Naylor says, but are still mostly focused on symptoms they can actually see happening. So, stick to specific examples about what to expect around their loved one with Alzheimer’s disease. For example, “Grandma has something called Alzheimer’s disease, which is causing changes in her brain. This means that she may have a hard time remembering things or finding the right word to say.”

8-10-year-olds

“I like to start conversations with kids this age with a question about what they already know or may have learned about a topic, so that you can provide additional information or correct misperceptions,” Naylor says. “Then parents can provide additional details that are specific to the family’s situation.”

Here’s an example: “Grandma has something called Alzheimer’s disease, which is caused by changes in her brain that affect her thinking and memory. This means that she may have a hard time remembering things or finding the right word to say. Many people with Alzheimer’s disease will keep showing changes in thinking over time, which means that Grandma’s memory is likely going to get worse.”

At some point while you’re talking, older kids (and teens) might go right for the question: is their loved one going to die from Alzheimer’s? It’s important to be honest here, Naylor says, explaining that you can’t predict exactly how their condition will progress. If you have had discussions about death and dying before, Sandbach says to pick back up where you left off with those.

Teenagers

Teens can understand illness and abstract concepts, but they still don’t have the same coping skills as adults, Naylor says. Chances are they’ve heard of the disease before, so again, start by asking what they know. Explain a bit about what Alzheimer’s is if you need to, and how it’s affecting your family right now.

“For example, ‘Grandma has something called Alzheimer’s disease, which is a neurodegenerative disease that impacts her brain and thinking skills. Neurodegenerative means that these symptoms are expected to get worse over time. For Grandma right now, this means that she is having trouble with finding the right words and remembering new information. I’m not sure exactly how things will change over time but will be sure to tell you if new things come up,’” Naylor says.

If your teen knows that some diseases can run in families, they may ask you if Alzheimer’s does too. Explain that Alzheimer’s disease comes on when people are older, and there are countless researchers looking for ways to treat and prevent it, Naylor says. You can also research answers together, and help your kid digest whatever information you find (lest they turn to Google without you there to guide them).

Don’t put off this conversation.

Of course it’s natural to want to spare your kids from sadness and talking about something so complex happening to someone they love. But if you don’t fill in the gaps for them, they’ll do it themselves.

“Kids are very observant,” says Naylor. “Many children will start to pick up on information about a hard topic before parents choose to have a conversation about it. I would always encourage parents to have these conversations sooner rather than later, as avoiding them can actually make kids more anxious or worry that they are the reason for changes they’re observing, like [a parent’s extra stress].”

Give your child a script.

Telling your kids how to respond if their loved one is having memory difficulties is helpful, these experts agree. Explain that Grandpa might call your younger child by the older child’s name. If it’s appropriate, explain that your little one can gently remind Grandpa of her name, Sandbach says.

“‘That’s OK, Grandpa, I’m Sally. I’m getting bigger, and I look a lot like my sister.’ Whatever phrasing you want to use,” she says. “There may be times, if somebody is farther along in the disease process, that you would instruct the child not to correct. If somebody’s getting upset easily and that correction could cause an escalation in behavior, then you wouldn’t want to do it.”

Many people with Alzheimer’s have good and bad days, Naylor says, and it benefits your kids to tell them that. “There may be times where changes in thinking, mood, or behavior can be better or worse. Children and teens benefit from reassurance that these fluctuations are not their fault, especially given that they can feel surprising or unexpected at times.”

Remind your kids of what their loved one can do.

Once your child has asked all their questions, wrap up by explaining that Grandma or Grandpa might mess up their name, but they still love them as much as they always have. Tell them that the activities they always enjoy doing together — puzzles, arts and crafts, spending time outside — are still possible.

“Reassure kids that their loved one still loves and cares about them, even if the interactions with them change over time,” says Naylor. “We can also help kids think about positive memories they’ve shared with their loved ones in the past.”

Experts:

Dr. Paige Naylor, Ph.D., pediatric clinical neuropsychologist at Children’s Hospital Colorado

Dr. Karen Sandbach, Ph.D., lifespan neuropsychologist, chief of neuropsychology and associate clinical director of Baptist-Wolfson Children’s Outpatient Behavioral Health