Dementia alone is a difficult topic to discuss within the family, and explaining dementia to a child can be much harder.
It can be tempting to simply avoid discussing a dementia diagnosis. It’s a painful topic and often the changes present in newly diagnosed people may not be immediately apparent to a child.
However, it is important to not be afraid to talk to children about a loved one’s dementia diagnosis. Make time to talk to them about it and listen to what they have to say. This will make it easier for them to understand the changes they will be observing over time and to properly cope.
Why it’s important to tell the truth
Think back on the time your loved one began to show symptoms of dementia, and how confusing and upsetting that may have been. Comprehending dementia when it happens may be even more confusing for children. Therefore, it is important to guide them right away.
It’s normal to want to shield children from difficult situations. However, children can sense tension or a negative atmosphere and will notice changes in behavior, even if the facts have not been told or explained to them.
So it’s better for a child to find out about a loved one’s diagnosis sooner rather than later. Being open and honest with the child will help them better understand and empathize with their loved one with dementia.
Explaining the facts
Fear usually stems from the unknown. By explaining dementia to a child, they may be less afraid to interact with your loved one.
Let them know that it’s an illness happening inside the brain, and it’s something they can’t exactly see, like they would with a cold, or a broken arm.
It’s good to explain how the disease affects the brain; you can tell them that the disease affects people’s thinking, and it may cause grandma or grandpa to not think as clearly as they once did.
Help the child understand that dementia is something their loved one can’t control, and that what is happening to them is not their fault.
Professor and gerontologist Peter Lichtenberg of Wayne State University also suggests using imagery.
“Early on in the Alzheimer’s and dementia movement, experts used visual explanations to help people understand dementia; something concrete that children can relate to. One of them was to imagine a skyscraper that’s all lit up, then the lights go off slowly, section by section,” he says.
Children should also be told that there is currently no cure for dementia, and that their loved one will get worse over time.
Storytelling can be a great way of explaining dementia to a child. There are a number of dementia books for children and videos that help explain the disease in a simple and relatable way.
Most importantly, remind them that despite the dementia, their loved ones are still the same people they love. You could tell them, for example, that grandpa is still grandpa, but the things happening in his brain make him behave differently. That said, he should be treated with exactly the same level of dignity, respect, and love as before.
Helping children cope
If you are still unsure about the steps towards explaining dementia to a child, you can also let them ask questions first. This will also help you measure how much they currently understand about the situation.
After you have discussed the dementia diagnosis with the child, check in every now and then to see how they’re doing. Their feelings about the situation may change as their loved one’s disease progresses.
Behavioral changes can make a loved one’s dementia diagnosis more difficult to understand for children. It may be upsetting for a child to find grandma or grandpa suddenly lashing out or getting agitated, especially if they are close. Help the child understand that dementia is something their loved one can’t control, and that what is happening to them is not their fault.
It’s also important to tell children that dementia isn’t contagious; in fact, giving grandma or grandpa a hug might do them a lot of help especially during this time.
It’s good to ask how they are feeling, or if there is anything that they don’t understand. Assure them as well that they are free to talk to you anytime, especially if they find themselves in a difficult or confusing situation. Many times, hugs can also do the trick.
Involving children in dementia care
Spending time and engaging with their loved one with dementia can also reduce fear and anxiety around the disease for the child. Plan out things they can do together. For example, they can play mobile games, make a scrapbook, do puzzles, dance, or watch a movie.
Or, you can have them do simple chores together, like setting the table, folding clean clothes, or sweeping the backyard. Beware, however, of giving children too much responsibility over dementia care; emphasize that bonding with their loved one already helps them immensely.
Take many pictures of your loved one with dementia and the child, to remind them especially in bad times that good days can still happen. This will help preserve the fond memories the child has of your loved one in earlier times before being changed by dementia.
Don’t leave a child alone with your loved one with progressed dementia unless you are confident that they can handle the situation on their own. Supervise any activities between children and your loved one as much as possible.
In conclusion
While explaining dementia to a child can seem like a daunting task, it’s extremely important to help them understand the situation. Enlightening them on the diagnosis can also benefit them in the long run by teaching them how to cope with difficult emotions and how to best interact with their loved one in positive ways. Make sure to be with them every step of the way, and continue to be honest and open with them.