How to Talk to Kids About Dementia-Related Psychosis
Young children will have questions, and you can be a resource for them.
Dementia can take a real toll on families. When a loved one begins losing treasured memories, forgetting names, and even mistaking the identities of close relatives, it is heartbreaking for everybody involved. And in cases of dementia-related psychosis—where hallucinations and delusions cause a patient to believe things that aren’t real—these episodes can be scary and confusing to witness.
“Seeing a family member’s behavior change in such a profound way has a direct impact on relationships,” says Angela Lunde, neurology associate and co-investigator of the Outreach, Recruitment and Engagement Core in the Mayo Clinic Alzheimer’s Disease Research Center in Rochester, MN. This is especially true for young children, who don’t necessarily understand dementia and how it affects someone’s brain. “For children, it can be hard to navigate seeing a grandparent in a way they haven’t seen before,” Lunde explains. “Unless a child has good guidance and understanding in terms of what can go wrong, I think oftentimes that relationship [between the child and the person with dementia] can become strained.”
If it’s your parent (or older relative) with dementia, and your child with all the questions, it can be a stressful situation for you to be sandwiched in the middle of. We asked three dementia experts to help guide you through the process of what to say—and how to say it.
1. Be honest with kids.
Kids who see their grandparent regularly will undoubtedly notice the changes in their memory and personality. Don’t try to ignore that reality or shield them from the truth. “Adults should answer questions openly and honestly,” suggests Monica Moreno, senior director of care and support for the Alzheimer’s Association in Chicago. Also, “it’s okay not to have all the answers.”
Follow your child’s lead as you answer her questions. “Let kids set the stage in terms of what they know and what they want to share, and how what they’re seeing makes them feel,” Lunde says. Tell your child that you are all experiencing these emotions together and working through the challenges as a family.
Suggestion: “I’m sure you have noticed changes in grandpa’s behavior recently due to his illness. We’re all working through this as a family, and I’m here if you want to talk.”
2. Explain clearly what dementia-related psychosis is (in age-appropriate terms).
“Tell your child the name of the disease,” Lunde says. “It’s important to let them know that grandma or grandpa has an illness that will not get better. They may look the same on the outside, but their brain is changing on the inside due to this illness.” To explain psychosis symptoms to children, you can tell them that their grandparent sometimes sees things that aren’t real, like an imaginary person or object.
Dementia-related psychosis can be especially confusing for children if they usually see their grandparent at their best. Melissa Armstrong, M.D., director of the Mangurian Clinical-Research Headquarters for Lewy Body Dementia at the University of Florida in Gainesville, explains that people with dementia can often get short bursts of energy and clarity during family gatherings, seeming more like their old selves for a few hours in the presence of guests. “People with dementia can actually rally for a few days,” she says. “That’s both good and bad. It does mean that some of these events with families can go more smoothly.” But it also means that children may not fully understand why a grandparent is “on” one day and extremely forgetful or confused the next. Try to explain this to them as simply and clearly as you can.
Suggestion: “Grandma’s brain can sometimes play tricks on her. She might feel fine one day and very confused the next, so don’t be surprised if she forgets things. She might even forget your name or where you go to school, but that doesn’t mean she doesn’t care about you.”
3. Validate their feelings.
There’s no getting around it—dementia-related psychosis causes strong emotions for everyone who witnesses it (it can be just as scary for the patient, too). “If people have been married for 50 years and all of a sudden the husband is saying, ‘You’re cheating on me’ to the caregiving spouse, that is hugely painful for the spouse, caregiver, and the kids, too,” Dr. Armstrong says. She suggests reassuring young children and making sure they feel safe.
Suggestion: “Grandpa didn’t really mean what he just said—that’s the illness talking, but I know how scary that must have been for you. How are you feeling?”
4. Remind them that their grandparent loves them.
It’s very easy for kids to take hallucinations and delusions personally, especially if their grandparent becomes angry or agitated. Try to help your child understand that this isn’t how their grandparent actually feels, but that the disease is making them confused. “I would probably tell them, ‘This disease that your grandma or grandpa has can play tricks on the mind, and grandma or grandpa may see or hear things that are not there, like people or animals. Even though we cannot see these people or animals, grandma or grandpa’s brain thinks they are real,’” Lunde suggests. That doesn’t mean that their grandparent no longer cares about them.
Suggestion: “Your grandma loves you very much, even when it seems like she doesn’t. Try to remember that she behaves this way because of her illness, not because of her true feelings.”
5. Provide simple suggestions for how to respond in the moment.
Your child shouldn’t feel like he needs to ‘fix’ the situation when a psychosis event is occurring. Instead, tell him he can always ask you for help or have him watch as you respond, so he can do likewise in the future.
While you want to be sensitive to your family member’s feelings, you do not need to pretend you can see or hear the hallucinations along with the grandparent, says Lunde. Instead, “focus on being kind to their feelings—something even a young child can understand,” she says. For instance, if the hallucination is making Grandpa happy, your child might say, “Wow, that sounds wonderful, I’m glad you are happy.” If Grandma feels afraid, your child might respond, “That sounds scary. I’m here for you.” And if the person with dementia is becoming agitated, bring in other family members to diffuse the situation.
Suggestion: “If grandpa starts talking about things that aren’t real, you don’t have to pretend to see those things. Just tell him you hear him and care about him. I’m here if you need someone to help you out.”
6. Continue talking about it as your loved one’s symptoms progress.
The very nature of dementia is ever-changing, and your loved one may seem markedly different from one day to the next. Tell the kids that you are an open book to discuss any questions they have. “These should be ongoing conversations because dementia symptoms progress and change over time,” Lunde says. Check in with the child from time to time to see how they are feeling.
Suggestion: “Grandma may seem different every time you visit her. We all feel different on differet days, right? Sometimes you're happy, sometimes you're sad. It's similar for Grandma right now.”
7. Encourage your child to focus on the good.
There will be plenty of grief during this process, but there can also be moments of joy. “Oftentimes, when we think about dementia, we think about decline and loss of abilities,” Lunde says. “For children, one of the best things we can do is help them see a grandparent or relative with dementia as a whole person. [They] may have some decline and some changes, but at the same time, there are many things they can still do.” Maybe it’s as simple as a daily walk around the block or spending time with a beloved pet. These experiences can still be meaningful for children and give them a connection point with their grandparent, even if they have trouble communicating in detail.
Suggestion: “Grandpa has trouble talking right now, but he loves it when you come over and play the piano. Could you play a song for him next time you come visit, or take him for a walk around the neighborhood?”
- Dementia-Related Psychosis Symptoms: National Institute on Aging. (n.d.). “Alzheimer’s and Hallucinations, Delusions, and Paranoia.” nia.nih.gov/health/alzheimers-and-hallucinations-delusions-and-paranoia