When a grandparent or other loved one develops dementia, you face the challenge of explaining a complex, progressive disease to your children. You want to be honest without frightening them, prepare them for changes without overwhelming them, and help them maintain connection with someone they love who is becoming different. The words feel impossible to find.
What children need to understand about dementia:
Children are remarkably resilient when given honest, age-appropriate information. What hurts them more than the truth is being excluded from family reality, sensing that adults are hiding something worrisome, or witnessing confusing behaviors without explanation. When you explain dementia clearly and answer questions openly, you help children process their own feelings, maintain relationships despite changes, and develop empathy and compassion.
Key principles for talking to children about dementia:
- Use age-appropriate language matched to their developmental stage
- Be honest and direct; children sense when adults aren't telling the truth
- Reassure them that dementia is not contagious and it's not their fault
- Prepare them for specific changes they'll witness without overwhelming them
- Keep communication ongoing as the disease progresses rather than having one big conversation
Let's walk through exactly how to explain dementia to children at different ages, including word-for-word scripts and strategies for common questions and concerns.
Before You Talk to Your Children: What You Need to Know
Before explaining dementia to your children, make sure you understand the basics yourself so you can answer their questions accurately.
Essential information to have ready:
- What type of dementia your loved one has (Alzheimer's disease, vascular dementia, Lewy body dementia, frontotemporal dementia)
- What specific symptoms your children have noticed or will notice (memory loss, confusion, personality changes, repetitive questions)
- What will stay the same (love for the child, some familiar behaviors)
- What will change over time (increasing forgetfulness, needing more help, possible behavior changes)
- How your family will handle care and what might change in the child's routine
Your emotional preparation:
Children take emotional cues from adults. If you approach the conversation with calm honesty rather than panic or excessive sadness, children will follow your lead. It's okay to show appropriate emotion (your children should know this makes you sad too), but try to convey that while this is difficult, your family will handle it together.
Practice saying key phrases out loud before talking to your children: "Grandma has an illness in her brain called dementia." "Grandpa's brain isn't working the way it used to." Hearing yourself say these words helps you feel more confident during the actual conversation.
How to Explain Dementia to Preschool Children (Ages 3-5)
Preschool-aged children understand the world in concrete, simple terms. They need very basic explanations without medical complexity or distant future predictions.
What preschoolers can understand:
- Someone they love is sick
- The sickness affects how that person thinks and remembers
- It's not contagious and not their fault
- The person still loves them even when acting differently
Script for explaining dementia to preschoolers:
Sit with your child somewhere comfortable where you have their attention. Use simple, clear language:
"You know how sometimes when you get sick, you might have a tummy ache or a cough? Grandma has a different kind of sickness. She has something wrong with her brain, and it's called dementia.
Your brain is the part of you that helps you remember things and think about stuff. Grandma's brain isn't working right anymore, so sometimes she forgets things. She might forget what we just talked about, or she might ask the same question lots of times.
This sickness isn't like a cold. You can't catch it from being near Grandma, and it didn't happen because of anything you did. Grandma still loves you very much, but her brain makes it hard for her to remember things.
Sometimes Grandma might seem confused or say things that don't make sense. That's okay. We'll help her, and we can still spend time with her and give her hugs."
Answering preschoolers' common questions:
"Why is Grandma's brain sick?"
"Sometimes brains get sick when people get older. Doctors are trying to help, but this kind of sickness doesn't go away like a cold does."
"Can I catch it?"
"No, you definitely cannot catch dementia. It's not like a cold or flu. You're safe."
"Did I make Grandma sick?"
"No, nothing you did made Grandma sick. This happened because of something in her brain, not because of anything anyone did."
"Will Grandma get better?"
Be honest but gentle: "The doctors have medicine that might help Grandma feel better, but her brain won't get completely better. That's why we're being extra loving and patient with her."
Activities to help preschoolers understand:
- Read age-appropriate books about memory and dementia written for young children
- Role-play simple situations: "What could you do if Grandpa asks you the same question three times?"
- Do activities together that don't rely on memory, like coloring, listening to music, or looking at picture books
How to Explain Dementia to Elementary-Age Children (Ages 6-10)
Elementary-age children can understand more detailed explanations and benefit from knowing what to expect. They're also developing their own emotional awareness and need permission to express their feelings.
What elementary-age children can understand:
- Basic brain function and how dementia affects it
- That dementia gets worse over time
- Specific behavior changes they might witness
- That their feelings about these changes are valid
Script for explaining dementia to elementary-age children:
Choose a quiet time without distractions. Be prepared for questions and emotional reactions.
"I need to talk with you about something important that's happening with Grandpa. He's been diagnosed with something called dementia, which is a disease that affects the brain.
Your brain controls everything you do: thinking, remembering, talking, and even moving your body. Dementia is when parts of the brain stop working the way they should. This makes it really hard for someone to remember things, think clearly, and sometimes even recognize people they know.
Grandpa has dementia, which means his memory is getting worse. You might notice that he forgets things you just told him, or he asks you the same questions over and over. He might not remember your name sometimes, or he might get confused about where he is or what day it is.
This isn't Grandpa's fault. He's not trying to forget things or be confusing. His brain just isn't working right anymore, kind of like a computer that has a problem and can't save information correctly.
Dementia is something that gets worse slowly over time. That means Grandpa will probably need more help as months and years go by. But right now, we can still visit him, talk with him, and do things together. He still loves you very much, even if he sometimes seems different or forgets things."
Answering elementary-age children's questions:
"What causes dementia?"
"Dementia happens when something damages the cells in the brain. There are different types. Grandpa has [Alzheimer's disease/vascular dementia/etc.]. Scientists are still studying why some people get dementia and others don't. It mostly happens to older people, but it's not a normal part of getting old."
"Is Grandpa going to die?"
Be honest: "Everyone dies eventually, but dementia itself isn't usually what causes someone to die. Grandpa might live for many more years. What matters is that we make the time we have with him as good as possible."
"Why does Grandpa sometimes get angry or say mean things?"
"Dementia can change how people act and feel. When Grandpa's brain can't work right, he might get frustrated or confused, and that can come out as anger. Remember that it's the disease making him act that way, not that he's really mad at you. If Grandpa says something that hurts your feelings, it's okay to tell an adult and we can help you understand that it's not about you."
"Can I still visit Grandma?"
"Yes! Visiting is really important. Even if Grandma doesn't always remember your name or what you talked about last time, she can still feel love and enjoy spending time with you. Your visits make her happy."
Preparing children for specific situations:
Walk through scenarios they might encounter:
- "If Grandpa asks you the same question three times, don't say 'You already asked me that.' Just answer nicely each time, because to him, it's the first time he's asking."
- "If Grandma doesn't remember your name, you can gently remind her: 'Hi Grandma, it's me, Sarah.' Don't get upset with her. It's okay."
- "If Grandpa seems confused or upset, you can come get me or another adult. You don't have to fix it yourself."
How to Explain Dementia to Preteens and Teenagers (Ages 11-18)
Preteens and teenagers can understand complex medical information and appreciate straightforward honesty. They're also navigating their own identity development and may have strong emotional reactions to a grandparent's decline.
What preteens and teens can understand:
- Detailed information about brain function and disease progression
- Long-term implications and difficult realities
- Their own complex emotions about loss and change
- How they can actively help and participate in care
Script for explaining dementia to preteens and teens:
Have this conversation in a setting where your teen feels comfortable talking about difficult topics. Respect their maturity by being direct.
"I need to talk with you about Grandma. She's been diagnosed with dementia, specifically [type]. I want to be honest with you about what this means because you're old enough to understand what's happening.
Dementia is a progressive brain disease. Different types affect the brain in different ways, but they all cause problems with memory, thinking, and eventually physical abilities. [Type of dementia] specifically affects [brief explanation of what this type does].
What you're going to see is that Grandma will gradually lose more of her memory and cognitive abilities. She might not recognize you at some point. She might repeat herself constantly, get confused about basic things, or have personality changes that make her seem like a different person. Eventually, she'll need full-time care for everything.
I know this is really hard to hear. It's hard for me too. Watching someone you love change like this is a kind of grief, even though they're still alive. You might feel sad, angry, frustrated, or even embarrassed about how she acts. All of those feelings are completely normal and okay.
Right now, Grandma can still [current abilities]. She knows who we are and can still have conversations, even if she repeats things. We want to spend quality time with her while we can, and I hope you'll want to be part of that. But I also understand if sometimes it feels too hard or uncomfortable. We can talk about that as we go."
Answering teens' questions:
"Is dementia genetic? Will I get it?"
"Some types of dementia have genetic factors, but most cases aren't directly inherited. Having a family member with dementia does slightly increase risk, but it doesn't mean you'll definitely develop it. Scientists are researching prevention strategies. Living a healthy lifestyle (exercise, good diet, staying mentally active, managing stress) may help reduce risk."
"Why can't doctors fix this?"
"Right now, there's no cure for most types of dementia. Medications can help manage symptoms for a while or slow progression slightly, but they can't stop or reverse the brain damage. Research is ongoing, but dementia remains a disease we can't cure yet."
"Is this going to take over our whole family?"
"Grandma's dementia will definitely affect our family, and as it progresses, care will require more time and resources. But we're going to work together as a family and also get professional help when needed. Your life shouldn't completely revolve around this. It's okay to still focus on school, friends, and your own activities."
"Do I have to visit if it makes me uncomfortable?"
"I encourage you to visit because relationships matter, and Grandma benefits from connection even if she can't show it clearly. But I understand that watching this disease is painful. If visits become too difficult, we can talk about taking breaks or finding other ways to stay connected, like looking at photos together or writing letters even if she doesn't read them."
Involving teens in care and decision-making:
Teenagers can participate more actively than younger children:
- Explain medical updates in detail if they're interested
- Include them in some family care planning discussions
- Let them help with specific caregiving tasks if they're willing (visiting, helping with activities, technology assistance)
- Encourage them to record memories or family stories while their grandparent can still share them
For more guidance on navigating these conversations and maintaining family connections, see our resource on how to tell family about dementia diagnosis.
Addressing Children's Specific Concerns and Fears
Beyond basic understanding, children often have specific worries that need direct attention.
"Will you get dementia too?"
Be honest without creating unnecessary anxiety: "Most people don't develop dementia. It's more common in older people, and I'm taking care of my health in ways that might lower the risk. But I understand why you'd worry about that. If I ever had memory problems, we'd see a doctor right away."
"Will I have to take care of Grandma?"
Reassure children they're not responsible for caregiving: "Taking care of Grandma is a job for adults, not kids. Your job is just to be her grandchild and spend time with her when you can. Adults will handle all the serious care stuff."
"Is Grandpa going to forget he loves me?"
This fear is particularly painful for children: "Dementia might make Grandpa forget your name or specific memories you've shared. But love is a feeling, not just a memory. Even if he can't remember facts about you, he can still feel that you're someone special and important to him. And the love you have for him stays real no matter what he remembers."
"Why does Grandma ask me the same thing over and over?"
Explain the mechanism: "Dementia damages the part of the brain that makes new memories. So when Grandma asks you something, by the time you answer, her brain has already forgotten she asked. It's like trying to write on a whiteboard that keeps erasing itself. Just answer patiently each time, knowing it's not that she doesn't listen, it's that her brain can't hold onto the information."
"Sometimes I feel angry at Grandpa for being this way. Is that bad?"
Validate their feelings: "It's completely normal to feel frustrated or angry sometimes. Dementia is hard to deal with, and it's okay to have complicated feelings about it. Being angry doesn't mean you don't love Grandpa. It means you're human and this situation is difficult. Talk to me when you feel that way and we'll work through it together."
What Children Can Do to Stay Connected Despite Dementia
Help children maintain meaningful relationships with their loved one even as dementia progresses.
Activities children can do with someone who has dementia:
For younger children:
- Look at family photo albums and talk about pictures
- Listen to familiar music together
- Do simple art projects like coloring
- Go for short walks
- Play with pets together
- Read favorite children's books aloud
For older children and teens:
- Share music from the person's younger years
- Watch old family videos or look through memorabilia
- Do simple crafts or puzzles
- Help with gentle physical activities like gardening or folding laundry
- Share memories by asking "What do you remember about [past event]?"
- Simply sit together in comfortable silence
Teaching children communication strategies:
Help children learn effective ways to interact:
- Speak clearly and calmly
- Ask simple questions with yes/no answers
- Don't correct or argue when they say something wrong
- Use physical touch like holding hands if that's comfortable
- Focus on emotions and feelings rather than facts
- Join their reality if they're confused rather than trying to reorient them
When to Seek Professional Help for Your Child
Watch for signs that your child needs additional support beyond family conversations:
Warning signs a child needs professional help:
- Significant changes in behavior, sleep, or eating
- Declining school performance
- Withdrawal from friends and activities they used to enjoy
- Persistent sadness or anxiety
- Acting out or aggression beyond normal limits
- Physical complaints without medical cause (stomachaches, headaches)
- Expressing feelings of guilt or responsibility for their loved one's condition
If you notice these signs, consider:
- Talking with your child's pediatrician
- Connecting with a child therapist who specializes in grief and family illness
- Involving school counselors who can provide support during the school day
- Joining family support groups specifically for children affected by dementia
How CareThru Helps Families Keep Children Informed
When a family member has dementia, keeping everyone (including children) appropriately informed and coordinated reduces anxiety and confusion.
How CareThru supports families with children:
Age-appropriate updates: Share information with family members at different detail levels. Post updates after medical appointments that adults can see in full, while providing simpler summaries for children when appropriate.
Consistency in information: When children hear different stories from different adults, it increases their anxiety. A shared platform ensures everyone in the family shares accurate, consistent information.
Tracking good moments: Document positive visits and meaningful interactions so children can look back at times they connected well with their loved one, reinforcing that relationship continues despite changes.
Coordinating visits: Use shared calendars to schedule when children will visit, helping them prepare mentally and emotionally for time with their loved one.
Recording memories: Some families use the notes feature to preserve stories, conversations, or special moments before they're lost to dementia progression. These become treasured records children can return to later.
The platform doesn't replace family communication, but it provides infrastructure that keeps everyone, including older children, appropriately informed without overwhelming younger ones or creating communication gaps that breed anxiety.
Books and Resources to Help Explain Dementia to Children
Books for young children (ages 3-7):
- "What's Happening to Grandpa?" by Maria Shriver
- "Wilfrid Gordon McDonald Partridge" by Mem Fox
- "Still My Grandma" by Veronique Van den Abeele
- "Grandma's Cobwebs" by Beverley Hollins
Books for older children (ages 8-12):
- "The Memory Box" by Joanna Rowland
- "My Grandpa's Brain" by Mica Bock
- "What Happens When Someone Has Dementia?" by Pete Wallis and Joseph Wilkins
Books for teens:
- "The Forget-Me-Not Memory Book" by Julie Sedivy (teen version)
- "Still Alice" by Lisa Genova (for mature teens)
Online resources:
- Alzheimer's Association resources for kids and teens
- National Institute on Aging information for families
- Local Alzheimer's Association chapters often offer programs specifically for children
Ongoing Conversations as Dementia Progresses
One conversation isn't enough. As dementia progresses, children need updates and opportunities to process new changes.
Check in regularly:
- Ask how children are feeling about their loved one
- Notice if behavior changes suggest they're struggling
- Update them before major transitions (moving to memory care, hospice)
- Answer new questions as they arise
Before significant changes:
If your loved one is moving to a memory care facility or entering hospice, prepare children in advance:
"Grandma's dementia is getting worse, and she needs more care than we can provide at home anymore. She's going to move to a place where nurses and caregivers can help her all day and all night. This doesn't mean we don't love her or that we're giving up. It means we want her to be safe and get the care she needs."
After death:
When your loved one dies, help children process both death and the grief they've already been experiencing:
"Grandpa died today. I know you've been sad for a while because he hasn't been himself for so long. It's okay to feel relieved that he's not confused or struggling anymore, and it's also okay to feel sad that he's gone. Both feelings make sense."
For more information about supporting family through difficult transitions, see our guide on how to know when it's time for memory care.
Frequently Asked Questions About Explaining Dementia to Children
At what age should I tell my child about their grandparent's dementia?
Tell children at any age when they're likely to notice changes in their grandparent's behavior. Even preschoolers benefit from simple explanations that help them understand why Grandma acts differently. Tailor the complexity to their developmental stage, but don't wait until they're older if they're already witnessing confusing behaviors. Children handle truth better than secrecy or sensing that adults are hiding something worrying.
What if my child is scared of their grandparent after seeing behavior changes?
Validate their feelings: "I understand that Grandpa's behavior scared you. His brain doesn't work right anymore, and sometimes that makes him act in ways that seem strange or even frightening. He can't help it." Reassure them about safety: "You're safe. Adults are here to make sure everyone is okay." Don't force visits if genuine fear develops, but encourage connection through photos, videos, or brief visits with adult support present.
Should I let my children see their grandparent in late-stage dementia?
This depends on the child's age, emotional maturity, relationship with the person, and what "late-stage" looks like in this case. Many experts recommend allowing children who want to visit to do so, with preparation about what they'll see and adult support present. Brief visits to maintain connection can be meaningful. However, if the child is very young or expresses strong resistance, forcing visits may cause more harm than good.
How do I explain to my child why we can't cure Grandma's dementia?
Use honest, age-appropriate language: "Doctors and scientists are still learning about dementia and trying to find cures, but right now they haven't figured it out yet. The medicines Grandma takes can help her feel a little better and might slow down how fast the disease gets worse, but they can't make it go away completely. Sometimes medical science just doesn't have all the answers yet."
What if my child stops wanting to visit because it makes them sad?
Have an honest conversation: "I've noticed you don't want to visit Grandpa as much anymore. Can you tell me what's making that hard?" Listen to their concerns. Validate their feelings while gently encouraging connection: "I understand it's sad and uncomfortable. It's hard for me too. But your visits matter to Grandpa even if he can't show it clearly. Could we try shorter visits or do specific activities that feel better to you?" If resistance continues, take a break and revisit later rather than forcing unwanted visits.
My child asks questions I don't know how to answer. What should I say?
It's okay not to have all the answers: "That's a really good question, and I'm not sure of the answer. Let me find out and we'll talk about it." Then research the answer or ask your loved one's doctor. Children appreciate honesty about what you don't know more than sensing you're making up answers or avoiding their questions.
How do I talk to my child about their own risk of developing dementia someday?
Be reassuring without being dishonest: "Most people never develop dementia, even if someone in their family has it. Scientists think that staying active, exercising your brain, eating healthy foods, and taking care of your overall health might help lower the risk. You're young and healthy, and by the time you're older, scientists will probably know even more about preventing and treating dementia than they do now."
Should I involve my children in caregiving tasks?
Age-appropriate involvement can be positive, but children shouldn't bear caregiving responsibility. Young children might help with simple activities like bringing Grandma a glass of water or sitting nearby during visits. Teens might help with supervised tasks like looking at photos together or assisting with technology. But make clear that adults handle actual caregiving. Children's job is to be grandchildren, not caregivers.
Disclaimer: This article provides general guidance about explaining dementia to children and is not a substitute for professional medical or psychological advice. Every child and family situation is unique. Consult with your child's pediatrician, a child therapist, or family counselor for guidance specific to your child's needs and your family's circumstances.
Sources
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