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How to Involve Young People in Dementia Care and Awareness

This article offers warm, practical guidance for family caregivers and community members who want to include children and teens in dementia care and awareness. It addresses the common fear and confusion young people may feel, and provides concrete steps to build understanding, reduce stigma, and create meaningful intergenerational connections. You will find real phrases to say, age-appropriate activities, and ways to adapt your approach for different settings and stages of dementia.

Key points

  • Start early: talk to young people about dementia in simple, honest terms before they see confusing changes.
  • Use books, stories, and role-play to build understanding and reduce fear.
  • Give young people specific, simple roles during visits—like holding a photo album or choosing a song.
  • Model patience and positivity; your behavior teaches the child how to respond.
  • Don't force interaction if the young person is uncomfortable—short, positive visits build trust over time.
  • Involve teens in awareness projects like a dementia club to turn understanding into action.
  • Adapt activities to the stage of dementia and the age of the child for the best experience.

Why Young People Need to Be Part of the Conversation

Research shows that children often have a poor perception of Alzheimer's disease and dementia, and stigma is real—88% of people living with dementia report feeling discrimination. When we keep young people away from the topic, we unintentionally reinforce fear and confusion. They may overhear worried conversations, see changes in a loved one, and feel confused or even scared without understanding what is happening. By involving them early, we can replace that fear with empathy, curiosity, and a sense of purpose. Intergenerational activities are a powerful way to 'eradicate the fear and confusion around the disease' and help children see the person, not just the diagnosis.

What Is Happening for the Young Person

A child or teen may feel a mix of emotions: sadness that their grandparent or older relative seems different, frustration when communication is hard, or even guilt if they feel they don't know how to act. They might ask 'What's wrong with Grandpa?' and if we repeatedly say 'nothing is wrong,' they learn that their observations are not valid. This can lead to withdrawal or acting out. At the same time, young people are naturally curious and compassionate. When given honest, age-appropriate information and a safe space to ask questions, they can become wonderful allies. Studies show that structured intergenerational programs help children develop coping skills and build a community of mutual understanding and encouragement.

The Unique Opportunity for Families and Communities

Involving young people is not just about helping them—it also benefits the person living with dementia. Meaningful engagement, like looking at photo albums together, reading a story, or doing a simple puzzle, can help the person stay stimulated and feel valued. As one expert notes, 'they're still a person and I think people need to view it through the person and not through the disease.' For the caregiver, having a young person who understands the situation can reduce isolation and create shared moments of joy. In faith communities and schools, starting a 'dementia awareness club' or offering age-appropriate education can build a generation that is more compassionate and prepared.

General caregiving information, not medical advice. Check medications and major care changes with your clinician.

Step-by-step

  1. Start with your own education first. Before talking to a child, learn the basics of dementia—what it is, how it affects behavior, and that it is not the person's fault. Use resources from the Alzheimer's Association or a local dementia support group. This will help you answer questions calmly and honestly.

  2. Choose a calm, private time to talk to the young person. Say something like: 'I want to talk with you about Grandma. You may have noticed she forgets things sometimes or gets confused. That's because she has an illness called dementia. It's not her fault, and it doesn't mean she loves us any less. It just means her brain is changing.' Use age-appropriate language—for younger kids, compare it to a computer that sometimes glitches; for teens, offer more detail about brain changes.

  3. Use books and stories to start the conversation. For younger children, read books like 'Still My Grandma' or 'The Memory Box' together. After reading, follow up with a coloring session or a puppet show led by the child. For older kids, suggest books like 'Still Alice' or 'Dancing with Rose.' Let the child lead the discussion—often, questions come out during free play or quiet moments.

  4. Give the young person specific, simple ways to interact. For example, say: 'When you visit Grandpa, you can bring a photo album and ask him about the pictures. Or you can bring a puzzle with big pieces and work on it together. If he seems confused, just smile and say, 'That's okay, let's look at this one.' Provide options so they don't feel stuck or awkward.

  5. Set up a short, structured activity for the first visit. Choose something the person with dementia enjoys and can still do, like listening to old music, sorting socks, or looking at a simple picture book. Give the young person a clear role: 'Your job is to hold the book and turn the pages slowly. Grandma will point to things she likes.' This reduces anxiety for both.

  6. Model patience and positivity. When the young person sees you speaking gently, not correcting every mistake, and focusing on connection, they will learn to do the same. Say things like: 'It's okay if she calls me by the wrong name. I know she loves me.' This teaches the child that the relationship is more important than getting every detail right.

  7. Encourage the young person to ask questions later, in private. After a visit, ask: 'How did that feel for you? Do you have any questions about what happened?' Listen without judgment. If they express sadness or frustration, validate it: 'It's hard to see someone you love change. I feel that way too sometimes.'

  8. Involve teens in awareness projects. If your school or faith community has a dementia awareness club, encourage them to join. If not, help them start one. Teens can create posters, lead a fundraiser, or organize a visit to a local memory care facility. One high school club called themselves the 'Dementia Awareness Club' and required members to go through training, including role-play, to learn how to respond and understand that dementia doesn't look the same for everyone.

  9. Use technology to stay connected. If visits are not possible, set up a video call. The young person can read a story aloud, play a guessing game (e.g., 'I'm thinking of something that is black and rectangular and plays shows'), or simply talk about their day. For a person with moderate to severe dementia, focus on reminiscing about the young person's childhood or the older person's happy memories.

  10. Be flexible and don't force it. If the young person feels uncomfortable or hesitant, it's okay to step back. As one expert says, 'Don't force it if your child or grandchild feels super uncomfortable... it's okay that maybe they don't have the greatest relationship with your loved one with dementia.' You can try again later with a different activity or a shorter visit. The goal is positive connection, not perfection.

What not to do

  • Do not tell the young person 'nothing is wrong' when they ask about changes. This backfires because the child learns to distrust their own observations and may feel confused or anxious. Instead, give a simple, honest explanation: 'Grandma has an illness that makes her memory not work as well. It's not her fault.'

  • Do not force a young person to spend long periods with the person with dementia if they are clearly distressed. This can create resentment or fear. Instead, start with short, structured visits (10-15 minutes) and let the child choose when to end. You can say: 'We can go say hi for a few minutes, and then we'll go play.'

  • Do not correct the person with dementia in front of the young person. If the older person says something inaccurate, the child may feel embarrassed or unsure. Instead, model gentle redirection: 'That's a nice memory. Let's look at this photo together.' This teaches the child that connection matters more than being right.

  • Do not assume the young person understands dementia just because they are smart. Even teens may have misconceptions or fears. Take time to explain in simple terms and ask what they think. Use a resource like the 'Understanding the Changing Brain' guide to help explain brain changes in a visual way.

  • Do not exclude young people from family discussions about dementia. This can make them feel isolated or imagine worse scenarios. Instead, invite them to be part of the care team in a small way—like helping to choose a music playlist or picking out a photo album for a visit. This gives them a sense of purpose and belonging.

Practical tools

  • Age-Appropriate Books

    For younger children: 'Still My Grandma' or 'The Memory Box'—read together and follow up with a coloring session or puppet show. For older kids: 'Still Alice' or 'Dancing with Rose'—these can spark deeper conversations. Use the local library or the Alzheimer's Association to find these titles.

  • Simple Activity Kits

    Create a small bag with a few items: a large-print puzzle (fewer pieces), a photo album with labeled pictures, a soft scarf to fold, or a simple card game like 'Go Fish.' Give the young person the bag before a visit and say: 'Here are some things you can do together. You choose what looks fun.'

  • The 'Three Good Things' Challenge

    After a visit, ask the young person to notice three good things about the person with dementia—like 'their hands seemed clean,' 'they smiled when I played the song,' or 'they ate a lot of their food.' This shifts focus from loss to positive moments and builds a habit of gratitude.

  • Role-Play Script for Teens

    Practice what to say if the person with dementia asks the same question repeatedly. Teach the teen to say calmly: 'That's a good question. I think we had pancakes for breakfast. Do you like pancakes?' This avoids frustration and keeps the conversation flowing. Use the Positive Approach to Care (PAC) training resources for more role-play ideas.

  • Dementia Awareness Club Starter Kit

    If your school or faith community wants to start a club, use these steps: 1) Recruit 5-10 interested students. 2) Schedule two one-hour training sessions covering dementia basics and role-play. 3) Plan a monthly intergenerational activity (e.g., music hour, art project, or storytelling). 4) Invite a local dementia care expert to mentor the group. This model has been used successfully with high school students.

  • Video Call Activity Ideas

    For remote connections, try: 1) A guessing game: 'I'm looking at something black and rectangular that plays shows' (answer: TV). 2) Reading a short poem or story aloud. 3) Sharing a 'memory of the week'—the young person describes a happy memory, and the older person can nod or smile. Keep sessions under 15 minutes.

Discuss with your clinician

Ask your doctor or a dementia specialist about age-appropriate educational materials for your child's specific age group.

Discuss any behavioral changes in the young person (e.g., withdrawal, anxiety, sleep issues) that may be related to their understanding of dementia.

If the person with dementia has significant memory loss or aggression, ask the clinician for guidance on how to prepare the young person for visits safely.

Ask about local intergenerational programs or support groups that include children and teens.

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