Alzheimer’s Disease and Children: Acknowledging the Overlooked Generation
Alzheimer’s disease and related dementias (ADRD) are frequently characterized as collective challenges that affect not only the individual diagnosed but the entire family circle. As memories diminish and behavior shifts, waves of adaptation, grief, and emotional distress impact all who care for the person living with dementia. Yet amid these repercussions, one demographic often remains unnoticed: children.
From a preschooler bewildered by a grandparent’s unpredictable conduct to a teenager grappling with the sudden role reversal of caring for a parent, young individuals are significantly affected by ADRD. Even though they are particularly vulnerable, children are frequently kept in the background—left uninformed, unsupported, and having to navigate a confusing and painful reality on their own.
A Child’s Mourning for the Living
An impactful instance of a child experiencing this situation emerges from a social media post by the Alzheimer’s Society, which showcased a school project by 13-year-old Rosie. In her writing about her grandmother, Rosie articulated dementia as “grieving someone who is still present.” Her sentiment captures the intricate sorrow children endure: the individual they cherish is physically there but transformed in ways that can confuse and devastate.
In addition to sadness, children facing ADRD in their families may grapple with a myriad of emotions, such as fear, anger, anxiety, and frustration. A grandparent who used to be affectionate may fail to recognize them. A parent might forget their name or behave unusually. This emotional chaos can lead to withdrawal, hindering potentially restorative interactions across generations.
When a Parent Suffers from Dementia
The hurdles are even more pronounced when younger-onset Alzheimer’s—diagnosed before age 65—affects a parent. Children in these cases often feel as though the foundation of their lives is shifting. Research underscores “disruption in various portions of their lives,” encompassing alterations in familial and peer relationships, household duties, and financial stability. Yet, in the face of distress, these young people frequently demonstrate remarkable resilience, empathy, and self-reflection.
The concept of “parentification,” where children take on caregiving roles well before reaching adulthood, is particularly poignant in these households. These young caregivers—estimated to be 5.4 million strong in the U.S. alone—offer support not only to parents with ADRD but also to relatives with diverse health challenges. Responsibilities can include managing medications, aiding with daily chores, and providing emotional reassurance.
These obligations can significantly impact mental health, physical wellness, academic performance, and growth. However, researchers also highlight the distinctive strengths that some of these young caregivers cultivate: maturity beyond their years, enhanced compassion, and a sense of purpose forged through adversity.
Time to Recognize and Assist Caregiving Youth
Despite the increasing acknowledgment of children as silent participants in the dementia journey, support systems remain insufficient. Advocates urge pediatricians, educators, healthcare professionals, and policymakers to recognize this “invisible population.”
In a recent article featured in Pediatrics, medical experts asserted that pediatric providers are ideally positioned to identify caregiving youth and connect them to necessary resources. Meanwhile, a publication in The Lancet advocated for systematic reform, suggesting that governments mandate health professionals working with chronically ill adults to inquire about young caregivers in the household—and link them to appropriate support services.
Breaking the Silence: The Significance of Truth and Engagement
One of the key insights from professionals involved with families facing ADRD is the importance of honesty. Protecting children from the truth of a loved one’s dementia, while often well-meaning, can cause more harm than good. Age-appropriate discussions lessen fear, encourage empathy, and provide children with a sense of agency in an otherwise perplexing scenario.
Children can—and should—be given the opportunity to engage with the person living with dementia. The shared moments, despite being brief or altered due to illness, can bring forth joy, understanding, and solace.
Connecting Across Generations Through Creative Engagement
To foster these intergenerational bonds, authors, therapists, and advocates are developing resources to facilitate better understanding and communication between children and their loved ones with ADRD. Carol Steinberg, a journalist, advocate, and author, recently published the book Come Grandpa Meow, Let’s Fly: A Heartfelt Children’s Story About Alzheimer’s Disease Plus a Guide to Intergenerational Activities. Merging storytelling with practical, accessible activities, this book encourages families to seek and cherish meaningful moments together.
The activities are thoughtfully designed to consider the cognitive and physical needs of both generations. As Steinberg reflects from her own experiences, cherished instances often occurred when her daughters sang for their grandfather—prompting delightful responses such as him whistling along. These “twinkles of joy,” as she describes them, illuminate the shadows cast by ADRD.
Meeting in the Moment: A Guiding Principle
At the core of Steinberg’s endeavors is the notion of “meeting in the moment”—creating a shared environment where a child and a person with ADRD can forge a connection.