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How to Explain Dementia to Children

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Dementia can be a difficult subject to talk about, especially when you are trying to explain the condition to a child. You might wonder when you should talk to them and what you should say, or you could be asking yourself what you shouldn’t say. In fact, you might even believe that, especially for young children, it’s best to put off that discussion for as long as possible.

If these are the sorts of questions rolling around in your head, here are some answers that might surprise and reassure you.

The Best Time to Explain an Alzheimer’s Diagnosis to Your Child

Believe it or not, experts say that the best time to talk to children about dementia is as soon as possible. Even very young children notice when something is different. While it’s natural to think you might be better off avoiding the subject, this approach can have unintended consequences.

When we try to protect our child’s feelings by acting like everything’s fine or worse still, lie to them, this can return to haunt us. While it might not matter much at the moment, eventually kids figure things out or, at the very least, question them.

Maybe they’ll notice some medical paperwork about a grandparent’s diagnosis. Perhaps they will see an increase in in home care services, or a visit from a nurse at home. Perhaps they will see a stack of Get-Well cards addressed to Grandma or Grandpa. Then out of the blue, your child chimes in with, “Mummy, why did Grandma get this card? I thought you said she wasn’t sick!”

Suddenly, you’ll have to come clean and explain dementia to the young person in your house. If you haven’t been candid before, your child might question if you are telling the truth now.

How do You Talk to Children About Dementia Without Frightening Them?

Don’t beat around the bush, especially if you provide in home care for your loved one. Sit down with your child and give it to them straight:

“Grandma has something called Alzheimer’s disease.” After all, the young people in your life are going to hear it sooner or later. When you explain things to them clearly yet gently, it cushions the fear factor.

Of course, it’s important to lay things out in an age-appropriate way that your child will understand. Later in this article, we’ll cover some guidelines for having a conversation about dementia with children of different ages.

You may also seek the advice of a Child Life Therapist, whose job it is to know how to explain health problems to youngsters. A social worker, nurse educator or even a home care agency that specialises in this area, such as Home Care Assistance might be able to help too.

There are also some good books about dementia education for children such as My Singing Nana, Granny in the Big House, or Grandma Rose

A Dementia Diagnosis is Not the Same as a Cold or Upset Tummy

Children, especially very young children, may not know the difference between an illness you usually recover from and one that is permanent. Tell kids that when it comes to care for the elderly, some diseases are not like catching a cold. Then clarify what it means.

On the one hand, the disease isn’t going to get better. The good part is that you can’t come down with the illness when you are around your loved one. If your child is fond of hugging their grandparent or sitting on their lap, make sure they know they can still do that. You might want to say that being close to Grandma or Grandpa is more important than ever.

You’ll also want to be on the lookout for what some experts call magical thinking. This is the tendency for children to think that the things they say and do can change other people. For example, “I got upset and yelled at Grandpa and now he has Alzheimer’s. Is it my fault?”

Age-Appropriate Discussions with Your Kids About Dementia

As children grow up and develop, the way they see the world grows and develops too. Understanding how children typically view disease, especially relating to aged care and care for the elderly, according to their age group can lead to more meaningful discussions with them.

Has your child been through an experience involving a sick family member? Have they seen programs on television or viewed films that might impact the way they perceive illness? Is your child aware of ageing and aged care services?  Will cultural background affect how they think about dementia? Pay attention to all of these factors when deciding how to go about including children in the discussion.

Let’s review some basic guidelines on how to communicate with children in an age-appropriate manner.

For very young children ages two or under:

  • Small children have very limited knowledge and understanding about disease.
  • They are more likely to get a feeling about something rather than process it analytically.
  • Very young children are highly attuned to their environment and readily notice changes.
  • For these reasons, the key to success is to emphasise comfort and to be as reassuring as possible.

For children ages two through six years old:

  • Children as young as two may begin to develop ideas about illness.
  • It’s quite common for children between the ages of two and six to ask questions about their grandparent’s disease and observed in home care or aged care services.
  • Address their questions as candidly as possible.
  • If you don’t know the answer to their question, just say so.
  • While you want to be strong and comfort your child, that doesn’t mean you should hide your emotions. For example, if you are feeling sad, express it.
  • Remember that even though your child might continue to enjoy normal childhood activities like playing, that doesn’t mean they’re not deeply affected by the illness.
  • Encourage your children to express their emotions with activities like reading a story together or working on an art project.

For children ages six through twelve years old:

  • When a child is a bit older, they start to form an idea of what illness is and how it can affect one’s body.
  • They now see that different people react to things in different ways.
  • They might be ready to learn more about how and why their grandparent might have developed dementia and might require aged care services or in home care.
  • Try having them give their loved one a dementia appropriate gift and use it together, such as a puzzle or colouring book.
  • Some kids in this age group enjoy recording their thoughts in a journal, while others may prefer reading, art projects or even participating in a support group.

For young adults ages thirteen to eighteen years old:

  • By the time your child is a teenager, it’s quite possible they have seen a family member live with an illness, receive in home care assistance or aged care services, or even pass away.
  • While they might have witnessed it before, knowing that someone they love is sick may still have a big impact on their adolescent life.
  • Share tips on dementia communication so they feel confident about how to interact with their grandparent.
  • Stay attuned to changes in your teenage child’s mood, behaviour or schoolwork.
  • Adolescents place increasing importance on relating to people of their own age. For this reason, a support group of peers who have a loved one with dementia can be beneficial.
  • Exploring self-expression is important. Activities like journaling and music are sometimes helpful in encouraging teens to explore their feelings.

Honesty About Dementia is Still the Best Policy

The best and simplest approach for explaining dementia to your child is as follows:

  • Be clear that there is currently not a cure for dementia.
  • Let them know that Alzheimer’s gets worse over time.
  • While you will risk upsetting your child, the higher virtue is to build trust by being honest.
  • Emphasise the ways they can still connect with and show love to their loved one.
  • When you’re not exactly sure what to say, look to your children. When they ask a question, answer it.

References

How to Tell Kids About a Loved One’s Illness

My Singing Nana

Granny in the big house

Grandma Rose

Talking with Children and Youth About Serious Illness

Parents’ guide

Association of Child Life therapists Australia

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