Honoring his grandmother: Asian American grandson’s fight against Alzheimer’s

Andrew’s childhood was shaped by the love and care of his grandmother, who later developed Alzheimer’s. Her journey—and the challenges his family faced navigating care—sparked Andrew’s passion for advocacy and inspired him to pursue a career in medicine. Now, he encourages other young people to speak up, get involved, and help make a difference in the fight against Alzheimer’s.

Wandering

When Andrew was born in the early 2000s, his grandparents moved from China to the United States to help raise him. While both of his parents worked, Andrew’s grandparents would take care of him and eventually his younger sister. Andrew’s grandmother, whom he called “Nai Nai” would take them on walks to the park and make them their favorite foods. Andrew especially loved watching cartoons with his grandmother.

Eventually the family noticed that Nai Nai was getting lost coming home from the park a block away from the house. Other times she’d leave the house saying she was going to the salon she used to get her hair done at in China. However, the scariest wandering incident was when the family went on a cruise together. Nai Nai went out for a walk and didn’t come back. After hours of searching, she was found by a crew member who had located her in the engine room.

It’s common for a person living with dementia to wander or become lost or confused about their location, and it can happen at any stage of the disease. Six in 10 people living with dementia will wander at least once; many do so repeatedly. 

Andrew, who wasn’t even 10 at the time, recalls watching his grandmother slow down. “There is a chair she’d always just sit in,” said Andrew. “I was curious why my grandmother was always in that chair. I didn’t understand why she [wouldn’t go to the park anymore]. In hindsight it probably had something to do with Alzheimer’s.”

Language barrier

More than half (56%) of Asian Americans believe that significant loss of memoryor cognitive (such as thinking or learning) ability is a normal part of aging. Studies indicate that Asian Americans exhibit a lower likelihood of developing Alzheimer’s or other forms of dementia compared to other racial groups. 

Because of this it makes it harder for individuals or families to recognize the symptoms and seek professional care. The reasoning behind this could be due to lifestyle, language barriers, inability to access quality care, and a lack of representation in research.

Andrew’s grandmother was eventually diagnosed with Alzheimer’s. Andrew’s family recognized that Andrew’s grandfather couldn’t care for two young children and a wife with dementia. They began to look at adult day cares near them in the East Bay Area. However, because Andrew’s grandmother only spoke Mandarin, it made finding any kind of care nearly impossible.

With no other options, the family decided the best thing to do was for Nai Nai to return to China to be cared for by family there. “The wandering became too much for my parents,” said Andrew. “In 2010 she went back to China where we had family that could care for her.”

Returning to China

Because Andrew had never known a time in his life without his grandmother, watching her move away to China was incredibly difficult. “It felt really surreal,” said Andrew. “It was like saying my mother was leaving forever. [I had this] sense of dread. I didn’t know what Alzheimer’s was, but I knew it was something really bad. I had hoped she’d get better, but when she [went] back to China, I realized she wasn’t getting any better.”

Unfortunately, the move to China was stressful for Nai Nai, and after arriving there, the disease progressed. “She was hospitalized for quite a while,” said Andrew. “A couple of weeks before she passed, my parents got a call that she was not doing well. We flew out to China to see her. I was in the hospital when she passed away.”

Becoming an advocate

It wasn’t for another six or seven years, when Andrew was in high school, that Andrew’s parents learned about the Alzheimer’s Association Walk to End Alzheimer’s®. They attended their local Walk in the East Bay (currently located in San Ramon), and there, Andrew was introduced to the Alzheimer’s Impact Movement (AIM).

AIM develops and advances policies to overcome Alzheimer’s and all other dementia through increased investment in research, enhanced care and improved support. Utilizing a nationwide network of volunteer advocates, their goal is to advance progress in the fight against Alzheimer’s and all other dementia.

Andrew was interested in becoming an advocate and volunteered to help with some simple data entry. From there, Andrew moved into writing letters to congressmen on behalf of AIM and later would attend meetings with members of congress.

“I’d seen my grandmother going from someone who took care of me, to not being able to care for herself,” said Andrew. “It really motivated me to [volunteer as an advocate]. Meeting legislators and being able to tell my story is so impactful.

“To convey why it’s so important makes me feel like I’m making a difference, like I’m supporting situations like my grandmother’s. It’s a privilege to be able to talk to a legislator, tell my story and advocate for change in health care. That is incredibly powerful.”

Calling the younger generation

Throughout the rest of high school and all of college, Andrew continued to volunteer his time as an Alzheimer’s advocate. Now, Andrew is stepping into a new way to help in the fight against Alzheimer’s, attending medical school. His hope is to blend his love of research on Alzheimer’s and genetics with the power of being a physician.

“Because of my grandmother’s experience, I will be going to med school,” said Andrew. “There are many ways to make a difference in fighting [dementia]. I wanted to do something in the field of Alzheimer’s.”

However, his work with AIM is not yet finished as he plans to reach out to the local chapter wherever he attends school. Andrew encourages other people his age volunteer as an advocate and share their unique perspectives with the disease. “We bring a different perspective,” said Andrew. “[Alzheimer’s] impacts kids. [Kids] don’t know what’s going on, it’s confusing and they’re more scared about the disease. [Becoming an advocate is] a great way to make a difference without doing all the training of becoming a doctor. There is a lot of opportunity to be able to do good and help.”

To become a part of the Alzheimer’s Impact Movement, visit alzimpact.org.

For more information on Alzheimer’s in the Asian American community visit alz.org/asianamericans.