Like many families in Orange County, 13-year-old Carter and 16-year-old Elise Chen have been personally impacted by Alzheimer’s disease. In this short video, Carter shares the story of how his grandfather and grandmother—affectionately known as Yeye and Popo—first met, and reflects on how their marriage exemplifies enduring love, even in the face of the challenges brought on by a disease that affects so many in our community. 

Both siblings shared their personal perspectives on the impact of Alzheimer’s disease in the Q&A below. 


Alzheimer’s disease has been described as a family disease. Why do you think that is, and how does it apply to those living with the disease? 

Elise: One effect of Alzheimer’s on my family is the comforting, healthy family rituals my grandparents passed down from my mom to us become shattered when the people who once took care of you can no longer care for themselves. Because Alzheimer’s slowly steals your ability to do basic things, your loved ones must do them for you and watch you during all waking hours.  

Carter: This is why I made a film to honor my grandmother’s love and sacrifice. Because these days, with social media’s call to pursue pleasure and instant gratification, we don’t often see love like this anymore. There is nothing glamorous about this kind of love. Making sure your beloved husband doesn’t put his jacket on before his shirt or brush his teeth with shaving cream is being an invisible superhero. But in making what is invisible visible, I wanted to honor all the caretakers of those with Alzheimer’s because it affects us all. 

 

Before your loved one had Alzheimer’s disease, what was your perception of Alzheimer’s or dementia in general? How has it changed since then? 

 Elise: I used to think Alzheimer’s was just forgetting things such as where you left your keys, but now I realize it is much more challenging and affects everyday functioning. I’ve seen it impact the whole family and how it can be physically and emotionally tiring. 

 Carter: My Yeye’s Alzheimer’s started when I was five, so I was too young to even know this disease existed. 

 

Fill in the blank. Being a grandson/granddaughter with someone with Alzheimer’s has been… 

Elise: Bittersweet. Even though it’s hard to see my grandpa’s condition worsen, I get to see what Yeye was like when he was a kid. Sometimes thinking of it that way helps. 

Carter: Hard. I used to play puzzles and walk in the park with my Yeye, but now Yeye can’t get out of bed and is now sleeping all the time. So it’s like he’s there but he’s not there in a kind of limbo. And I see the effect of what my mom and grandmother lost in their eyes. 

 

What do you think others can do to help? 

Elise: I think simple acts of kindness would mean more to Alzheimer’s caretakers than people imagine. Even small acts such as helping a caretaker run errands can make a big difference. And savor simple moments together such as playing card games or singing songs. There are some things that are not lost. 

Carter: I am hoping when people see the film I made about my grandma caring for my grandpa, more people will realize what it takes to care for a family member with Alzheimer’s and be inspired to help. 

Our Yeye’s eyes still light up when us grandkids enter the room even though he can’t get out of bed anymore. He may not remember our names, but he knows the faces of those who love him. So, no matter how hard it is, keep going because everything you do matters. Even when everything changes, love endures.