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Senior and child embracing each other at family gathering
June 20, 2022
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Talking to a Child about a Dementia Diagnosis

Watching a family member or friend progress through the stages of Alzheimer’s disease or another form of dementia can be very distressing for everyone, including children. Children can experience a range of emotions like fear, confusion and embarrassment, and they may even worry that they are somehow to blame for their loved one’s illness.

Dementia symptoms are often unusual and unpredictable, and if you are a parent navigating a loved one’s diagnosis, your child will need your support. Although everyone is different, here are some general tips to help your child understand what dementia is, what this diagnosis may mean for their relationship with their loved one and how to encourage conversations moving forward:

Be open and honest. Children are incredibly intuitive and usually sense when there’s stress and sadness around them. It’s natural to want to protect your child, but not addressing what’s going on will likely make them worry more. Try to talk about what the disease is, how it is affecting the person you love and explain that there will be changes in behaviour and symptoms in the future. Use clear, age-appropriate explanations like, ‘Auntie Kay has a disease in her brain that makes it difficult to remember things,’ ‘There isn’t a cure but scientists are working hard to find better treatments,’ or ‘You can’t catch Grandpa’s illness and it wasn’t caused by anyone or anything.’ The Alzheimer Society of Canada has an extensive list of books, websites and resources that may be helpful conversation starters.

Regularly check-in. Don’t wait for your child to come to you with their questions and instead check in regularly and often. Conversations during daily activities like walking the dog or doing dishes will place less pressure on your child and feel more natural. Acknowledge your own feelings of sadness, confusion and fear and you will encourage your child to share their worries as well. If the symptoms of dementia get worse and as your child becomes older and more aware, make sure you keep the conversation going.

Encourage connections. It can be difficult for a child to connect with a loved one who is confused and forgetful. Coming up with new ways to spend time together is important, especially as the disease progresses. Looking at photo albums, listening to music, working on a puzzle, singing, colouring or playing card games can all be fun activities for children and people living with dementia. It may be tempting to try to protect your child from your loved one’s symptoms by keeping them separated, but children can have positive and meaningful relationships with those struggling with dementia with some extra effort. If your child is resistant to spending time with your loved one, let them know that you understand these feelings because visits are difficult for you too. Create a signal or code word they can use if they need a break and start with short stays until they feel more comfortable.

Watch for distress. It can be difficult to know how your child is coping, even with open conversation and regular check-ins. The impact of this diagnosis will also depend on the pre-existing relationship between your child and the person with dementia as well as your child’s personality. Be aware of the signs of anxiety in children that may indicate that they are struggling. These can include nightmares or sleep difficulties, changes in eating patterns, recurring physical pain like an upset stomach or headaches and problems in school or with peers. Reach out to a health professional if you notice these signs. Support groups may also be helpful as they can connect your child with other children facing a similar situation.

Children are more resilient and emotionally intelligent than we often give them credit for. With support, as well as open and honest conversation, your child is likely to cope with this diagnosis better than you expect and may have an easier time than the adults in your life. Maintaining a relationship with their loved one is an opportunity to learn first-hand about life, family and love. The benefits for everyone make it worth the extra effort.