“What’s Wrong with Grandpa?” Explaining Alzheimer’s and dementia to children

Aging Jewishly – What our traditions teach us about growing old

By Rabbi Barbara Aiello

Just as Diane was about to deal another hand of UNO, her best friend, Laura, raised her hand indicating a pause in their game. “I’ll take this call because it’s Kaylee, my granddaughter,” Laura said. “Give me a moment to say hello.”

“Hi, Sweetie.”

“Pop Pop? Your Grandpa isn’t here right now.”

“Ummm … He went out for a walk.”

“I’ll be sure to have him call you when he gets back.” Laura hung up. “So, let’s get back to our game.”

Diane shook her head “No” and said, “I heard your conversation with your granddaughter. She wanted to talk to her grandpa, who, at this moment, is about 10 steps away in the study. But you said he was out for a walk. Nathan’s here and you didn’t put him on. What’s going on?”

Laura sighed and, when the tears came, she brushed them away with the palm of her hand. Then she owned up. “I know what I said wasn’t true. But Nathan’s not himself. It’s the dementia and it’s getting worse. Sometimes, he flies off the handle and other times he sits and stares. Kaylee loves her Pop Pop. The last time she was here he snapped at her, and she cried. How can I explain dementia to an 8-year-old?”

Laura’s question is a prescient one, especially since Alzheimer’s disease and other forms of dementia are on the rise. According to the Alzheimer’s Association, the number of Americans living with these conditions is growing and today there are more than 6 million Americans and their families who are affected, with a whopping 73% of these victims at 75 years of age or older.

This means that there are grandmas and grandpas, bubbys and zaydes, meemaws and pop pops exhibiting the sometimes-bizarre behaviors associated with cognitive decline and, in the process, confusing or even frightening their grandchildren. As Laura lamented, “How can I explain dementia to an 8-year-old?”

Laura is not alone but, gratefully, the Alzheimer Society of Canada (and other Alzheimer and dementia organizations) have come to the rescue.

“Helping Children Understand Dementia,” is a Canadian internet publication and one of several practical, down-to-earth sites that not only offers clear explanations using language young children can understand but also includes a list of things a child can do to help.

From the start, adults are encouraged to internalize an important fact that will make the entire explanation process a positive experience. Based on clinical experience, Lesley Carter, clinical lead at Age UK emphasizes that “Children are often naturally accepting when a loved one has dementia and find it much easier to communicate with them than adults do.”

Thus, an effective first step strategy is to open the lines of communication, using words that younger children will understand. Begin by acknowledging that Pop Pop has an illness called Alzheimer’s disease (or dementia). The illness makes changes in Pop Pop’s brain and that’s why he gets confused, has trouble talking and taking care of himself.”

Laura can share with her granddaughter that scientists don’t know why Pop Pop got Alzheimer’s, but scientists are trying hard to fi nd a cure. Laura can reassure Kaylee that people can’t catch Alzheimer’s like you catch a cold and, just because Pop Pop has it, doesn’t mean that you or your parents will get it.

Laura can remind Kaylee that, because of Alzheimer’s, Pop Pop may do things that are upsetting. He might forget your name. He might see or hear things that are not there and sometimes he will say the same thing over and over again. When this happens, Pop Pop gets frustrated. He’s not mad at you. He’s mad at himself.

The professionals encourage caregivers to approach young children like Kaylee with honesty. Laura could say that taking care of Pop Pop is a hard job and that Kaylee’s mom and dad help a lot. That’s why sometimes mom and dad get too busy or too tired to play with you. Laura can reassure Kaylee that if she gets angry or sad about this, she should talk to her parents about it. Don’t keep it inside.

Finally, Laura can comfort Kaylee by letting her know that Pop Pop likes to know you care. Hold Pop Pop’s hand or give him a hug so that he feels your love.

Following a frank talk about Alzheimer’s, Laura can encourage Kaylee to relate to Pop Pop in several important ways. Pop Pop and many others like him often respond well to memories from long ago, so looking at old photos often brings a smile or a story.

Together, Laura and Kaylee can make a Memory Box, filled with special things from Pop Pop’s past. One family gathered Judaica for the memory box so that their grandfather could select an item like a Chanukah menorah or a Kiddush cup and share a memory of a family festival or special event.

Thanks to the Alzheimer’s and Dementia Resource Center in Orlando, professionals there have gathered myriad ideas for families like Laura’s that are effective in helping children cope with the changes brought on by cognitive deterioration. For, as we read in Kohelet, “So if a man lives many years, let him rejoice in them all. But let him remember the days of darkness, for they will be many.”

It can be said that Alzheimer’s disease and the entire dementia spectrum are examples of what Kohelet refers to as “the days of darkness.” For Laura, Nathan and Kaylee, and for all the families challenged by these conditions, there are opportunities as well to interact with our dear ones as we dispel darkness and by creating moments of comfort and joy.

For 10 years, Rabbi Barbara Aiello served the Aviva Campus for Senior Life as resident rabbi. Her most popular columns are now published in her new book, “Aging Jewishly,” available on Amazon books. Rabbi Barbara now lives and works in Italy, where she is rabbi of Italy’s first Reconstructionist synagogue. Rabbi Barbara is the Radio Rabbi, broadcast on Friday evenings at 7 p.m. on WWPR am 1490 or live stream on 1490wwpr.com.