May is Asian American and Pacific Islander Heritage Month – an annual celebration that recognizes contributions of individuals of Asian and Pacific Islander descent in the United States. Actor and Alzheimer's Association Celebrity Champion Christina Chang recently shared how her mother’s Alzheimer's journey is inspiring her advocacy for others living with the disease and their families.
How did you get involved with Alzheimer's advocacy?
My mother Ruth was diagnosed with Alzheimer's disease in 2012. Her diagnosis blindsided me, and since I had no time to process what was going on, I jumped into action mode. I went directly to my local chapter of the Alzheimer's Association to get information about the disease and doctors in my area, and I attended a support group. For the next eight years, I served as a caregiver for my mom. Shortly after she passed away in early 2021, I decided to honor her and do what I could to help other families facing this devastating disease. I started working with the Alzheimer's Association, which has given me an opportunity to raise awareness and to let families know help is available.
When did you first suspect your mother might have Alzheimer's?
Looking back, my brother and I were probably seeing warning signs long before she received a diagnosis. Initially, we chalked up some of the peculiar behavior we were seeing to mom being in her 60s and living on her own. The first time my brother and I had a serious conversation about taking our mom to see a doctor happened after my baby shower. My mom, always vibrant, vivacious, social and the center of attention, was disconnected and socially awkward. Her sentences trailing, she made zero eye contact. Then, just three days before my daughter was born, on October 1, 2012, we found out Mom had Alzheimer's.
What lessons did you learn from being your mom's caregiver?
Obviously the disease itself is devastating, but for caregivers, the long goodbye is probably the most difficult aspect. With Alzheimer's, it’s a slow letting go and watching someone you love lose a little piece of themselves every day. It’s even harder if you have not had discussions and need to come up with a plan in the midst of a crisis. Like where is Mom going to live? Who is going to be the power of attorney? There are just so many decisions to make and things to manage in the wake of an Alzheimer's diagnosis. It can feel very overwhelming and hard to do when you yourself are grieving. Although it would have been difficult, I wish we had talked about some of these issues before it was on top of us.
What unique barriers or challenges do Asian American and Pacific Islander communities face in regard to Alzheimer's?
The Asian American and Pacific Islander community is incredibly diverse and encompasses many different ethnic groups. While there are various challenges within these unique communities, there seems to be more cultural stigma regarding Alzheimer's and dementia across these communities broadly. Statistics show that individuals from these communities are less likely to report symptoms of dementia to a medical professional, and therefore, less likely to get a diagnosis and the care they need. It also means many family caregivers do not get the help and support services they need. As a member of this community, I hope that sharing my mom’s story and how our family navigated the challenges of Alzheimer's will help inspire families to have more conversations about the disease.
What advice do you have for other families affected by Alzheimer's?
A lot of people who are caring for loved ones living with Alzheimer's feel alone or in the dark. Getting support was important to help bring me into the light, allowing for a new springboard for family conversations. It’s also important for caregivers to trust their gut. Alzheimer's is a unique disease and it presents itself differently in different people. You know your loved one best, so it’s important to trust your instincts in deciding how best to care for them and to provide that care in a way your loved one would want.
About: Alzheimer's Association Celebrity Champion Christina Chang currently plays Dr. Audrey Lim on ABC's "The Good Doctor." She lost her mother in January 2021 after a long battle with Alzheimer's.