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How to talk to your grandkids about Alzheimer’s disease

Our children are full of curious questions and while most are easy to answer, it can be a somewhat difficult task to explain an Alzheimer’s disease diagnosis to them. 

It’s often up to family members to explain to children why their parent or grandparent is behaving differently and how Alzheimer’s disease will impact them in future.

Dementia Australia CEO Maree McCabe says children are often the last ones to know about a grandparent or parent’s Alzheimer’s disease diagnosis and that having conversations about the condition is essential for them. 

“If they don’t understand why these changes are happening, then they can often be afraid of the person,” McCabe explains. “And when we explain to children that a loved one’s behaviour has changed because of the disease of the brain, they are so accepting of that.”

Having these important – but sometimes difficult – conversations is vital so children don’t think the changes in their family member’s behaviour is a result of something they’ve done. In most cases, the questions children ask are directly about how the diagnosis will impact their own lives. 

For example, some children may wonder if their grandparent’s diagnosis means it’s something their parents will go through, while some will ask if it’s similar to health issues they’re more familiar with such as cancer. 

According to McCabe, they’re also likely to ask questions about whether their grandparent will stop remembering them or if they’ll still be able to attend events that are important to them such as football games or birthday parties. Children want to know if they can still spend time with their loved one, play together and do the same things with them that they used to do.

“Things that are really relevant to them are likely to be the questions that they’ll ask and answering them honestly is really important,” McCabe says.

There’s also a very real chance that a child will directly ask if their loved one will die of Alzheimer’s disease. Given that dementia is the second leading cause of death in Australia and the leading cause of death of women, McCabe says it’s best to be honest when it comes to these curlier questions.

“It’s really important that children understand that firstly, their parents or loved ones are being honest with them and that there’s a level of trust in what they’re saying,” McCabe explains. “Then it doesn’t come as a surprise to children to see their grandparent or loved one deteriorate.”

And, while it may seem like a complex or confusing topic for a little one to get their head around, it’s possible for most to understand what these changes mean to the relationship they share with their loved one. Using simple and consistent language they understand can make all the difference. 

“Sometimes we don’t give children credit for the incredible things they do understand and what they can take on,” McCabe says. “I think keeping it positive and saying that although grandma or grandpa may not be the same, they’re still there, they still love you and their brain’s changing.”

McCabe says conversations that are simple and relatable work best and there are tools to make these chats easier. One particularly useful website is by Dementia Australia, which offers advice on how to talk to young children and teenagers about dementia.   

There’s also an array of useful books that can help start the conversation. McCabe recommends Brains, change and big long names by Lynda Moore, Do You Remember? by Kelly O’Gara and Anna McNeil, Getting to Know Ruben Plotnick by Roz Rosenbluth and Under the rose bush by Jane Fry and Sandi Harrold.

As technology evolves, a number of apps have also become available to help with these conversations and to ensure the grandchild-grandparent relationship remains as normal as possible – even when health is deteriorating due to Alzheimer’s disease. A Better Visit is an app by Dementia Australia that offers an array of activities children can do with a loved one with Alzheimer’s disease to stimulate memories and spark social interaction. 

Another way for children and their grandparents to nurture their bond is to participate in activities, such as music, reading and sport, that help preserve the memories they’ve created together over the years. Creative activities, such as craft, gardening and scrapbooking, will also provide children with something tangible they can cherish for years to come.   

“Children are much more amenable to these sorts of activities and they don’t have the barriers that we as adults often have,” McCabe says. “We find that children engage amazingly with their loved ones with dementia. 

“And they certainly don’t understand stigma or discrimination – they just understand that their nana or pa is changing and they just adapt to that.”