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Journalist and patient advocate Carol Steinberg discusses her article, “Alzheimer’s impact on the young should be an open book.” She argues that while Alzheimer’s disease and related dementias (ADRD) are known to affect the whole family, children under 18 are often excluded from conversations about a loved one’s condition, leading to fear, confusion, and missed opportunities for connection. Carol details the emotional toll on children witnessing cognitive decline, the distinct difficulties for those with a parent with younger-onset ADRD, and the significant challenges faced by the 5.4 million caregiving youth in the U.S., who often experience adverse mental, physical, and academic outcomes. The discussion highlights a growing consensus among experts urging truthfulness and age-appropriate involvement for children, calling on the medical community and others to better recognize and support young carers. Carol introduces her children’s book, Come Grandpa Meow, Let’s Fly, as a tool to facilitate these difficult conversations and promote meaningful intergenerational activities, allowing families to connect and “meet in the moment” despite the disease’s progression. Actionable takeaways emphasize the importance of candor, using resources to educate children, fostering continued relationships, and advocating for greater support systems for affected youth.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Today we welcome Carol Steinberg. She’s a journalist and patient advocate. Today’s KevinMD article is “Alzheimer’s impact on the young should be an open book.” Carol, welcome to the show.

Carol Steinberg: Thanks so much, Kevin.

Kevin Pho: All right, so just briefly share your story and the events leading you to write this KevinMD article.

Carol Steinberg: Sure. So I was a longtime journalist and I did a midlife career change. After my dad passed away from Alzheimer’s disease, I had the opportunity to join a local Alzheimer’s nonprofit organization, which grew into a national Alzheimer’s nonprofit, and I was an executive there for more than 15 years, so gained a tremendous amount of knowledge of Alzheimer’s disease.

I continue to write about that subject today. It’s definitely a passion of mine to give back. And most recently I published a children’s book, Come Grandpa Meow Let’s Fly, which was really a labor of love. That started about 25 years ago after my dad passed away.

Kevin Pho: All right. So tell us about this book itself as well as the article that you wrote on KevinMD for those who didn’t get a chance to read it.

Carol Steinberg: So Come Grandpa Meow Let’s Fly is a combination book. It’s really two books in one. The first part is a children’s story aimed at ages about five to nine, about a young child’s journey and seeing how grandfather change: his behavior change, his personality change, et cetera, and how their life comes full circle to really foster a new bond in light of the disease.

The second part of the book is intergenerational activities. And that is really because I think, and I know from my own family experience, we have the disease in our family, but we don’t know what to do now. Now what? And intergenerational activities offers a chance to really foster a bond in new ways.

The article that I wrote for you, which thank you for publishing, is really about the fact that children are almost the forgotten victims of Alzheimer’s disease. Alzheimer’s has been called a disease of the family, and it definitely is that. And the most vulnerable, really, are the children as well as the young carers, the 5.4 million youth caregivers in the U.S. who care for people with all types of diseases who experience fear, experience confusion, who are taking on responsibilities much beyond their years.

And I think that’s a message that we need to get out to the public and we need to get out to health care professionals that this is an audience that really needs to be recognized and supported.

Kevin Pho: So you work for an Alzheimer’s-related advocacy group. Tell us the role of children in terms of them being caregivers of Alzheimer’s-affected, perhaps, grandparents and the effect that it may have on them.

Carol Steinberg: So it’s estimated that there are about 5.4 million carers, young carers, in the U.S., and that includes caring for people with Alzheimer’s disease. I think one of the things we’re seeing is an increase, or I’m noticing an increase, in people with younger-onset Alzheimer’s disease taking place before someone is 65 years old. And that population could very well have young children and teenagers more so than those who are affected later on.

And they are taking on caregiving responsibilities at a very young age. And what we find is they don’t have as much time for social interactions. Let’s say younger children experience fear and confusion: What is happening to grandpa? What is happening to my parent? Why is their behavior changing? Why is their personality changing?

Do they still love me? So many unanswered questions that I hope my book, Come Grandpa Meow Let’s Fly, answers for these children. And really, parents need to find ways to engage children in activities that will foster these connections, that will take some of the fear away, that will help children understand what is going on with their loved one.

Kevin Pho: So give us perhaps some examples from your book or examples that parents can use to better educate pediatric caregivers or younger caregivers in terms of what they should expect when treating Alzheimer’s or Alzheimer’s-related diseases.

Carol Steinberg: One of the things that we hear all the time is that in explaining Alzheimer’s to children, especially young children, it should be a gradual progression. It can’t just be, bam, one day, this is what’s happening. They’re going to notice changes over time, and it should be explained slowly. And then perhaps a parent should sit down with a child, explain it like I do in my book, Come Grandpa Meow Let’s Fly. Explain that this is a brain disease. Answer any questions. I would think a common question is going to be, “Am I going to get the disease?”

“Am I going to forget? Am I going to lose my memories? Are you going to lose your memories if it’s happening to a grandparent, let’s say?”

And then think about ways that these bonds can be strengthened. So in the intergenerational activities section in my book, I offer the how-tos backed by scientific research, mostly from journals, and my knowledge gained over the years on how the generations can interact. The point of this is not just for the child to gain empathy and to gain new ways to interact, but it also helps the person with the disease: it stimulates them, it reduces isolation, it can improve their quality of life. And I think the key is to really come up with activities, whether it’s art or cooking or music or gardening, that really play to the strengths of the child and to the older person with the disease, so there’s not a sense of frustration.

Kevin Pho: Give us a success story. It could be something that you’ve heard, experienced, or even hypothetical where proper education or intergenerational activities really help that transition in terms of caregiving for those with Alzheimer’s-related diseases, both for the person with the disease as well as for the caregiver. What would be an example of a success story?

Carol Steinberg: So for example, if someone always loved nature, like my dad did, who’s really the subject of my book.

You could still go out with them in the garden and interact. Maybe the person with the disease can’t do what they used to do, but they could still smell the roses, if you will.

They could still listen to the birds singing. They could still take a walk if their mobility is not an issue, and that’s a really great way to engage both generations.

Kevin Pho: Now, are there any resources other than, of course, your book that you could recommend for younger caregivers?

Carol Steinberg: There are some great nonprofit organizations. One is Lorenzo’s House, which offers virtual support groups for young carers, teenagers, and even support groups for very young children who are impacted by the disease. The American Association for Caregiving Youth, which deals with all types of diseases, is another great resource.

The organization that I’m working with right now, Voices of Alzheimer’s, offers a newsletter that I write that profiles people with the disease and their experiences, and also has feature articles that talk about different aspects of the disease.

Kevin Pho: Now, in terms of the response that you received, both from your book and your advocacy efforts, tell me some of the responses that you’ve received.

Carol Steinberg: So I’m really excited about some of the responses I received to my book, including testimonials from who I consider renowned dementia experts like Teepa Snow, neurologists, Daniel Potts, who have called it very sensitive and powerful.

Most of all, one that really touched my heart is from Rebecca Chop, who has Alzheimer’s disease, who wrote a book herself. And she said that she believes this children’s book, Come Grandpa Meow Let’s Fly, is a stigma buster, and she said, quote: “As someone with the disease, there’s only one word for it: Wow.”

That to me means that I hit home with the disease.

Kevin Pho: Sometimes those with Alzheimer’s-related diseases have symptoms other than memory loss, right? They have agitation, confusion, personality shifts, and sometimes that can be very jarring, of course, to younger caregivers.

So what are some techniques that you recommend to minimize fear in an age-appropriate way?

Carol Steinberg: Again, communication is the main key, and that is one thing that children really notice a lot of times: the behavior changes. A grandparent, let’s say, who is so loving and cuddling to a child, all of a sudden has angry faces, et cetera.

I think one of the greatest lines I’ve learned from being in Alzheimer’s organizations is to always remember that it is the disease talking; it is not the person himself or herself. And I think young children could understand that if you say to them, “It’s the disease talking.”

Your grandparent still loves you, inside. Your grandparent still knows who you are, and you could still love him or her in a way that will show them that you recognize them and respect them.

Kevin Pho: We’re talking to Carol Steinberg. She’s a journalist and patient advocate. Today’s KevinMD article is “Alzheimer’s impact on the young should be an open book.” Carol, let’s end with some take-home messages that you want to leave with the KevinMD audience.

Carol Steinberg: One thing is that scientific journals have shown that discussions with caregiving youth should take place in a pediatrician’s office and in clinicians’ offices, and I recognize that their time is very limited.

But a simple question like, “Is there someone in your household, a child who’s impacted by the disease? Is there a youth in your household who’s taking care, helping to take care of someone with the disease?” That could open up conversations that could offer real help to someone, and it could open up conversations about resources that are available.

I don’t think any family should face this disease alone. Care partners shouldn’t face this alone. Children, young carers—there are lots of resources out there and they should take advantage of them. They should participate in support groups, so especially children see that they’re not the only ones facing what they could feel is an embarrassing situation and that they don’t know how to handle it.

See how others are handling it.

Kevin Pho: Carol, thank you so much for sharing your story, time, and insight, and thanks again for coming on the show.

Carol Steinberg: Thanks, Kevin. I appreciate it.