When a loved one develops dementia, it can affect the entire family. Learn how to help your kids understand dementia and how to prepare them for your next visit.
Dementia takes so much away from families—memories, names, a sense of normalcy, and independence. While it can be a lot for adults to process, it can be just as challenging for kids who may not fully understand what’s happening.
Children need time to adjust to change, especially when faced with something as unfamiliar and inconsistent as dementia. Rather than avoiding visits to preserve their memory of a loved one, it’s important to continue bringing them along, as it can be beneficial for both. To make this easier and help prepare them, having conversations beforehand about dementia and guiding them through some pre-visit discussions can equip them for the experience.
In this guide, we’ll explore the importance of family visits, strategies for explaining dementia to children, and practical conversation tips before and after these encounters. Equipping your children with knowledge and support can help them navigate this challenging season of change while preserving their relationships with their loved ones.
Importance of Visiting
Visiting a loved one with dementia is an essential aspect of maintaining family bonds, even when health changes. Research has shown that these visits provide emotional support and comfort not only for the person with dementia but also for their family members. Studies have demonstrated that regular visits can have a calming effect on residents who might otherwise become agitated. This effect highlights how visits can positively impact your loved one’s well-being and strengthen your relationship.
These visits are just as crucial for your loved one as they are for your children. As a parent, it’s your responsibility to model the importance of these visits and guide your kids on how to approach them. Children might feel nervous or scared visiting someone with dementia because the person they knew may seem different. However, instead of focusing on the past, you can use these moments as opportunities for emotional growth and to teach empathy.
Kids often follow their parents’ lead, so your children will mirror those behaviors if you demonstrate compassion, care, and love. Even if your loved one doesn’t remember every detail, you can teach your kids that their presence brings joy, familiarity, and love, making a significant difference in their comfort and happiness.
Explaining Dementia to Kids
Witnessing a loved one go through dementia is challenging for adults, but for kids, it can be even more confusing and complicated. While adults may understand that their loved one is gradually losing memories and aspects of their identity, children might struggle to grasp what that really means.
By having an early conversation with your kids, you can help them understand dementia and why their loved one is changing. However, it’s important to approach the conversation in a way that allows them to comprehend the situation and teaches them how to continue interacting with their loved ones meaningfully and positively.
Here are some tips for explaining dementia to kids:
- Be Honest: It’s natural to want to shield your kids from the reality of a loved one’s dementia, but children can still sense changes in behavior and routines, even if they don’t sense it directly. Being honest about the diagnosis allows them to begin understanding why things are different.
- Keep It Simple: Since dementia is a new and complex topic for children, using age-appropriate language is crucial. Offer clear, straightforward explanations they can grasp. For example, you could say, “Grandma’s brain is having trouble remembering things now.” You can explain that dementia is a disease that changes how the brain and body work together.
- Focus on Feelings, Not Just Facts: Dementia affects everyone differently. Some people may become irritable and frustrated, while others might become quieter or more anxious. Help your children understand that their loved one may be feeling upset or confused about forgetting things and that these emotions are part of the condition.
- Use Books or Visual Aids: For younger children, it can be helpful to use books, videos, or other visual aids designed for kids to explain dementia. The Penn Memory Center recommends several books, including “The Remember Balloons” by Jessie Oliveros, “Weeds in Nana’s Garden” by Kathryn Harrison, and “Grandma and Me” by Beatrice Tauber Prior & Mary Ann Drummond. YouTube videos can also be helpful. Here’s a great playlist of six videos made for and by children that explain what a dementia diagnosis might mean for your family:
Conversation Guide: Pre-Visit
Before your first visit, it’s essential to have a thoughtful conversation with your kids to help prepare them emotionally and guide their interactions with a loved one who has dementia. This preparation will help them understand how to communicate in a supportive and compassionate way. Without this guidance, children might unintentionally say something that causes confusion or correct memory slips in a way that could upset the person. By providing them with the correct information, you can help make the visit a more positive and meaningful experience for everyone involved.
To assist you, we’ve put together a conversation guide you can use to rehearse with your children before their visit.
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Prepare for Unpredictability
Parent: “Before we visit Grandma, I want to let you know that she might not recognize you right away. She might even forget things that we’ve talked about before. That’s just part of her memory loss, but it doesn’t mean she doesn’t love you.”
Child: “What if she doesn’t remember me at all?”
Parent: “That might happen, but we’re still going to spend time with her, show her love, and talk to her like we always do. She may start to remember bits and pieces as we go. But what matters the most is that she’ll feel comforted by seeing us.”
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Discuss Behavior Changes
Parent: “You might notice that Grandpa asks the same question more than once. Or maybe he’ll do things that seem a little different from how he used to do them. That’s because his brain works differently now, and it can make him repeat things or act in ways that surprise us.”
Child: “What should I do if he asks me the same thing a lot?”
Parent: “It’s okay to answer him as many times as he needs. Just stay calm, and don’t feel like you need to remind him he already asked. That could make him more confused. We’re there to be patient and gentle.”
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Encourage Patience and Gentleness
Parent: “When we talk to Uncle Bobby, remember to speak slowly and clearly. If he seems confused or has trouble following along, just smile and take your time. There’s no rush, so it’s okay if the conversation moves slower than usual.”
Child: “What if he gets frustrated?”
Parent: “If he seems upset, we can stay calm and maybe talk about something that makes him happy, like his favorite songs or memories of family holidays. Being calm helps keep things positive.”
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Role-Playing
Parent: “Let’s practice a few things, just so you feel more comfortable. Imagine we walk into the room and Grandpa doesn’t remember your name right away. What would you say?”
Child: “Maybe I could say, ‘Hi Grandpa, it’s me, Tommy! I’m so happy to see you.’”
Parent: “That’s perfect! Let’s also try what you’d say if he asks the same question a few times.”
Child: “I’ll answer like I normally would and just be patient. ‘Yes, Grandpa, we went to the movies yesterday.’”
Parent: “Great job. You’re ready! Remember, the most important thing is just being there for Grandpa and to show him love.”
Post-Visit Conversations
After your visit, it’s important to take time to check in with your child and see how they are feeling. Starting with an emotional check-in can help them process the experience by identifying any emotions or concerns they may have. It’s normal for kids to feel confused or sad after the visit, especially if they are very close to their loved ones.
Reassure them that even though their loved one’s memory may fade, the bond they share is still meaningful and valuable. Provide comfort by reminding them that their visit made a difference and praise them for how well they handled themselves. You can encourage them by highlighting specific things they did well and acknowledging how thoughtful and brave they were.
Also, open the door for them to ask any additional questions and discuss how they feel about future visits. Maintaining ongoing communication about their experiences with dementia will help them keep these critical relationships in an understanding and empathetic way.
Additional Resources:
- https://www.alzheimers.org.uk/get-support/daily-living/explain-dementia-children-young-people
- https://www.caregivercalifornia.org/2023/12/05/navigating-dementia-with-kids-a-guide-for-explaining-and-supporting-them/#:~:text=Instead%2C%20you%20can%20answer%20honestly,acts%2C%20thinks%2C%20and%20remembers.
- https://alzheimer.ca/en/help-support/i-have-friend-or-family-member-who-lives-dementia/making-meaningful-visits#:~:text=The%20importance%20of%20visiting&text=Visits%20can%20be%20a%20source,a%20person%20living%20with%20dementia.
- https://www.alz.org/media/greatermissouri/visiting_loved_ones_with_dementia.pdf
- https://journals.sagepub.com/doi/pdf/10.1177/153331750101600307
- https://www.alzheimers.org.uk/dementia-together-magazine/june-july-2018/little-visitors-people-dementia-spending-quality-time
- https://www.nursinghomeabusecenter.com/resources/children/
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