In 2020, it was estimated that there are 6.2 million people in the United States living with dementia. With the number of Americans aged 65 years and older increasing, this number is expected to reach 12.7 million by 2050. Despite the common knowledge that most people living with dementia are institutionalized, 70% of adults with neurocognitive disorders live in the community (co-habitat with adult children or live in homes with private caregivers). Sons and daughters of the sandwich generation are taking on the responsibilities of the primary caregiver to their elder parents while simultaneously parenting their own children (infants to teens). It is no wonder with all that stress adult children face, they are often referred to as the “invisible patient”.
It’s no surprise that parents often lack the time and energy to properly explain why grandmama’s underwear is in the refrigerator, grandpa’s cursing problem, or why the cat keeps getting wrapped up as a Christmas present. Children are trying to cope just as much as adults and adjust to the changes impacting their family’s lives. Many families suffer alone with the undisclosed and unseen battle of trying to make sense of a complex neuro-cognitive disorder.
No matter what age you are, everyone is impacted by the personality and physical changes of a loved one’s neurocognitive disorder.
Children are very sensitive to subtle changes in adult behaviors. Without an explanation, a child witnessing their grandmother having trouble remembering their name and/or wandering around getting lost may feel these occurrences are their own fault or make up their other equally troubling reasons for such behavior. Kids often internalize these behaviors as a result of something they did or become worried that the behavior is contagious. Children are well equipped to handle these situations if given the proper educational tools within a safe space to ask questions and share their feelings. Not only are kids able to cope but they also are in a unique position to sincerely connect with their grandparents. And what better way to create a long-lasting connection than with reading, art, and music.
At Elderhealth, we envision a world where neurocognitive disorders are not stigmatized and can be talked about openly.
We are personally paving the way starting with our very own children. When starting this endeavor, we found that it is often uncomfortable to discuss dementia and Alzheimer’s disorders with our children, not to mention tackle some of their very thought-provoking and difficult questions.
To these parents we say: fear not, you got this! We encourage you to start with a book, as we did (see the video and resources below).
Thank goodness we have a wealth of resources that can help us on our mission (see our Resource Library). Take comfort from our personal experience! If you provide an environment and the resources to your children they will guide the discussion. And just in case, you get some questions that keep you up at night… We are here to help!
Reach out, share a book and your story
One out of every nine people older than 65 years suffers from neurocognitive disorders, and this number is expected to increase. It’s time to change our society’s view and dispel the stigma of dementia and Alzheimer’s disease forever. A great way to start is by having open, honest conversations with our children through an activity like storytime.
Eight books about dementia for kids and tweens, as referenced in the video
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Weeds in Nana’s Garden Ages 6+
by Kathryn Harrison
This book follows a young girl who gardens with her grandma. One summer the girl notices that grandma has not picked the weeds in her garden. The metaphor continues throughout the book with “weeds” growing in grandma’s brain as well. Nice illustrations and nice metaphors that kids can understand.
Memory Box Ages 4+
by Mary Bahr, David Cunningham (Illustrator)
Follows a grandpa who makes a memory box with his grandson when he begins to develop dementia. Follow up the book with a memory box or memory board activity.
Why Did Grandma Put Her Underwear in the Refrigerator Ages 4+
by Max Wallack, Carolyn Given
A little girl is affected by the changes in her grandma as she develops dementia. At first, she is mad. After she learns about the disease she is able to find compassion and love and accept her grandmother as she is.
The Dementia Diaries: A Novel in Cartoons Ages 12+
by Matthew Snyman
Follow the stories of Brie, Fred, and other young carers as they try to understand and cope with their grandparents’ dementia at all stages of the illness.
The Remember Balloons Ages 5+
By Jessi Oliveros
James’ Grandpa has the best balloons because he has the best memories. But when Grandpa’s balloons begin to float away, James is heartbroken. No matter how hard he runs, James can’t catch them. Grandpa no longer has balloons of his own. But James has many more than before. It’s up to him to share those balloons, one by one.
Grandma and Me: A Kid’s Guide for Alzheimer’s and Dementia Ages 4+
By Beatrice Tauber Prior Psy.D. (Author), Mary Ann Drummond RN (Author)
A gentle, yet age-appropriate description of Alzheimer’s disease, while providing tools that help children continue to have a relationship with their loved one despite the disease. This book addresses a difficult topic with love and understanding and provides the tools for children to successfully navigate the journey ahead.
Striped Shirts and Flowered Pants: A Story About Alzheimer’s Disease Ages 4+
By Barbara Schnurbush
Libby and Nana love to read stories and color pictures together. They plant the garden in spring and feed the songbirds. But Libby notices that Nana is forgetting the words in books. She’s mixing up the names of birds. She’s wearing clothes that don’t match. What’s going on? When Libby’s parents tell her about Alzheimer’s disease, she begins to understand what is happening to Nana. And with their reassurance and help, she finds ways to be with Nana and still do the things they love.
Still My Grandma Ages 4+
By Véronique Van den Abeele
Camille and her grandma have a special friendship. They have sleepovers, bake chocolate cupcakes together, go out shopping, and giggle at old photographs. But one day Grandma forgets Camille’s name. Then she can’t remember where to put her shoes. Camille learns that her grandma is sick, but “not the kind where you cough and blow your nose.” Grandma has Alzheimer’s disease, which is what makes her do strange things. And even though Grandma has to move out of her house and rely on nurses to care for her, Camille finds a way to continue their special traditions.
We encourage you to talk about neurocognitive disorders with your kids, family, and community.
At ElderHealth we hope to give parents the courage and education they need in order to feel comfortable talking to their kids about their loved ones diagnosed with neurocognitive disorders. We believe that changing our societal views on neurocognitive disorders will open the door for increased compassion, higher support group participation, and more research studies. Ultimately we would like to see a less stigmatizing world so caregivers and patients can feel more comfortable seeking out support, medical care, and realize improvements in their own quality of life.
2 Responses
Dementia is such a difficult subject to address with children but this video shows exactly how it should be handled, I appreciate Laura and Melissa’s sensitivity in discussing this topic with these amazing kids!!! Each child is so unique, their questions shows their personalities and compassion to the elder community. Thank you!!
Thank you so much for your comment, Fran. This is a very important topic to us and so glad you found it helpful!