Alzheimer's and the family: Opening the conversation with children

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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