Dr. Eboni Green
December 5, 2024
A family “picture” remains etched in my mind—even though it occurred about three decades ago. We were visiting my parents in Florida, and my young daughters, 6 and 9 at the time, brought along a family tree book. Sitting at the dining room table, they both began filling in facts each of them knew well, such as their name, birth date, my name and their father’s name, their grandparents’ names.
But then they got stuck. Where were my parents’ parents—their great grandparents—born? Both my parents were in the adjacent kitchen, and I turned to my mother and asked, “Where were Daddy’s parents’ born?” Before she could even answer, my dad piped in with the correct response. I had never thought to ask him directly. I had never thought to ask him because Alzheimer’s disease had robbed him of his memory and other functions.
Shame on me!
This is just one of many regrets I have in how we interacted—or didn’t interact—with my father as his condition progressed. We didn’t know better at the time. Even if he didn’t know the correct answer, we still should have engaged him in the process. He was sitting right there in his wheelchair—his ability to walk now impaired by the brain disorder.
Had I known then what I’ve learned since, the interaction would have been different. My knowledge of Alzheimer’s disease and related dementias (ADRD) began developing a few years after my dad passed away in 1997 when I left my journalism career to take a communications position at a local nonprofit organization helping people with Alzheimer’s and their caregivers. I would later serve for more than a dozen years as an executive at a national foundation with a similar mission, and I am still involved in the Alzheimer’s community today.
In all the years that I’ve engaged with and interviewed experts and families impacted by ADRD, several common themes have emerged. One is the need for practical resources, as well as guidance in finding them. Too many people receive a diagnosis and are then left to fend for themselves.
Myriad resources exist, but research shows they’re underutilized by care partners, possibly because they’re not talked about them by clinicians, don’t know where to obtain them, or are overwhelmed by the sheer challenges of caregiving.
However, resources such as educational materials, support groups, care navigator programs like Medicare’s new GUIDE model, clinical trials, and tips on healthy lifestyle choices and meaningful activities are critical to the wellbeing of both individuals with the disease and family members.
It’s not just adults who need resources. What about young children, whose parent, grandparent or other loved one is experiencing memory loss or other symptoms of ADRD?
I address this in my just-released children’s book, Come Grandpa Meow Let’s Fly: A Heartfelt Children’s Story About Alzheimer’s Disease Plus a Guide to Intergenerational Activities.
“As overwhelming as this [disease] can be for us adults, just imagine how puzzling it must be for young children,” I note in the book’s introductory letter.
I wrote the first draft of this children’s book as part of the grieving process the week of my dad’s death. Then, as my knowledge grew from being invested in the Alzheimer’s community and later as a grandmother, the book took on multiple iterations over many years until it reached its published form.
Come Grandpa Meow, Let’s Fly tells the story of the changing relationship between a young girl and her grandfather before and after Alzheimer’s disease. It is designed to give families a way to explain the disease to young children with sensitivity and respect.
Prompted by the family tree scenario I noted earlier, the storybook is uniquely followed by an intergenerational activities section. The activities, such as gardening and music, are intended to answer the “now what?” question, helping children and loved ones with ADRD interact and connect in new ways. I refer to it as “meeting in the moment.”
Research has shown that children and young adults have poor perceptions of individuals with ADRD and poor understanding of the condition. But engaging the generations can produce “a mutually beneficial outcome: relationship building.”
According to researchers, intergenerational programming offers the younger generation benefits such as greater empathy toward individuals with ADRD, increased self-confidence and social skills, and heightened sense of community responsibility. The older generation reaps greater activity engagement and stimulation, improved mood, better quality of life, and reduced social isolation.
Here are some things to consider when planning intergenerational activities, regardless of whether the person with ADRD resides at home or in a care facility.
For individuals with ADRD and family members, including children, finding these “moments”—a twinkle of joy, laughter, connections, or remembrance—can make all the difference when facing this heartbreaking disease.
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Carol Steinberg is a semi-retired writer and editor, a former executive at nonprofit organizations, and a former journalist. Her first children’s book, Come Grandpa Meow Let’s Fly: A Heartfelt Children’s Story About Alzheimer’s Disease Plus a Guide to Intergenerational Activities, was published in November 2024. The book pays tribute to her dad, who had Alzheimer’s disease, and her mom, who was his heroic care partner.
