My dad’s dementia has recently changed and he’s become quite different over the last while. Until now, I haven’t said anything to my young kids (ages 8 & 11), but it seems now I will have to explain something.

Signed, have to do it?

It is natural for a parent to want to protect their children from the diagnosis of dementia. Since many people in the “sandwich generation” – mainly Gen-Xers - care for their own children as well as their parents, the struggle of “doing it all” sometimes means that the grandchildren could be inadvertently – or purposefully - unaware about what is transpiring with their grandparents. It is important to know that your kids need help learning about how their grandpa’s brain has been affected.

It is equally important to be honest and explain things calmly and well. Children can often sense your distress and giving the reasons for his behaviour or memory loss may actually be a calming factor for them. You know your children best and how to tailor the discussion to them, but enlisting help can also be a good thing. For instance, having an unaffected spouse, an aunt or uncle, or another family member explain the situation can often help balance the message for the kids.

Although dementia is usually slow to progress, the changes can become noticeable to a grandchild when a grandparent is unable to interact with them or play with them as before – like discussing a school science project or play chess, for example. Therefore, providing practical examples is useful when explaining what dementia is to a child.

Witnessing older adults age is not a given in our society, and allowing children a chance to do this is important. Taking them to a retirement home or to volunteer with seniors is helpful if they haven’t had much exposure. The reinforcement of smiles, appreciation or rewards is often helpful in teaching these skills.

Let your kids discuss their feelings about their grandpa’s illness and how it affects them. Share your own feelings of sadness or worry, but balance it with an explanation of how being a family and assisting each other is part of the cycle of life.

Some kids are reluctant to visit a nursing or retirement home. Limit these visits, if they become too difficult.

Don’t scold or reprimand your child if they are reticent to interact with their grandpa; and above all, don’t lay guilt trips. Rather, try to find an activity or a happy excuse for visiting. Have the kids draw pictures as a present for the grandparent; or encourage baking and bringing over treats. Most importantly, find an activity they can do together. Since long-term memory is often maintained, family trees and pictures from earlier times may elicit interesting stories for the kids to listen to.

Regular one-on-one quality time with grandpa may help normalize situation for them and will prevent children from feeling shut out of his life.

It also is okay to use humor and share funny moments with grandpa, but it is essential to let the child know who they can turn to if they begin to find situations or conversations difficult. The dementia symptoms that perturb you may not be evident or concerning to a child, who is more innocent and has less preconceived notions. There are many books, websites and resources targeted to help youngsters understand. These can help support your efforts. Reach out to your local Alzheimer’s society for help finding these resources.

Make sure that your child knows that you appreciate them being part of grandpa’s care and help them see how their involvement is of benefit to you as well. Some families elect to shield children from seeing the illness progress. Ultimately, it is an invaluable learning experience about life and family. Most children rise to the challenge and learn about the frustration, sadness and the satisfaction of caregiving along the way.

Nira Rittenberg is an occupational therapist who specializes in geriatrics and dementia care at Baycrest Health Sciences Centre and in private practice. She is co-author of Dementia A Caregiver’s Guide available at www.baycrest.org/dacg Email questions to caregivingwithnira@baycrest.org

Nira Rittenberg is an occupational therapist who specializes in geriatrics and dementia care at Baycrest Health Sciences Centre and in private practice. She is co-author of Dementia A Caregiver’s Guide available at www.baycrest.org/dacg Email questions to caregivingwithnira@baycrest.org

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