Joanne Hsu is a volunteer with the Buddhist Tzu Chi Foundation, known as Tzu Chi USA, helping increase awareness of Alzheimer’s and other dementia in Chinese-speaking communities by delivering Alzheimer’s Association information and resources.
Joanne, tell us about your personal connection to Alzheimer's disease.
My paternal grandmother was diagnosed with Alzheimer’s; she battled it for as long as I could remember. We began to see signs in the early 2000s. During the two decades before her passing, I only saw her about twice a year, as she was in Taiwan and I was living in the United States.
Every year I visited, I saw a gradual decrease in her cognitive abilities. Only two of her five children were actively involved in her care, and it was sad to see how the family was unable to navigate the disease. Putting myself in her shoes, I know that I don't want to be diagnosed with this disease and have my family be ill-equipped to care for me.
Because of my grandmother's disease, I wanted to educate myself in order to help other families. Yes, it is a scary disease, but education around things like engaging the person with the disease
are helpful. Alzheimer’s can be heartbreaking for everyone involved if you don’t know where to turn or what to do. I set out to change that in any small way I can.
What do you wish you had known about the disease before it entered your life?
I wish my family had known more, looked more, listened more. At its onset, we did not realize it was Alzheimer’s. No one knew how to interact, or that we should alter some of our own behaviors. My grandmother had housing, she had food, but people kept her out of conversations because it was too frustrating. Without conversation or engagement, a person cannot thrive and live their best life. I only wish other families will accept help and resources so they are educated in ways other families may have not been.
For my entire family, I wish I would have information about how things could progress, and what to expect
. It’s important for people to know about the stages of the disease
, and how to prepare. Today, I know that as early as the very onset of the disease, at diagnosis, it’s important to start financial and legal planning
. There are many things we could have done when my grandmother was in the early stages of her disease. Then I would have wanted to learn more about daily care
, and how to approach some of the more common Alzheimer’s behaviors
. The Alzheimer’s Association has ample resources around topics like wandering
that can help families dealing with the disease today.
Tell us about your involvement with Tzu Chi as an Alzheimer’s Association volunteer.
My culture still generally looks at Alzheimer’s as part of getting old, which is in part a lack of education around the disease. Awareness and education are the key.
My focus is helping families and all those living with and affected by Alzheimer’s. Some families are lost, and don’t even know they can get help, much less where. I deliver and advocate with the Alzheimer’s Association resources available because although someone may not need the help today, they may need it later. Frequently reminding people of these assets allows them to be proactive or reactive when Alzheimer’s or dementia appears in a loved one.
As I volunteered with Tzu Chi, I realized that many people with a loved one with Alzheimer’s will ask a question over and over again, hoping to make them remember something specific. It is exactly what my family did: “Who am I? What is my name? Why don’t you remember me?” I realized how many people need to be educated so they can properly communicate. I am most proud to volunteer because I want other families to learn from my experiences.
As I connect with the Chinese community, some of the biggest challenges of my volunteer work is just to get people to come and listen. I want people to know that they do not have to have Alzheimer’s in their life today to be able to educate yourself now. You only need to be open to learning.
I was born in Taiwan, and later attended middle school in Singapore, coming to the United States during my junior year of high school. In 1999, after completing my undergraduate and graduate education in North Carolina, I moved to California, where there is a vast Chinese community living in their own bubble. While I am proficient in English, when I read, I still default to Chinese. For those like me, who default to using Chinese-language websites and resources first, having access to language-specific support groups and other community-specific tools is especially important. These communities need resources tailored to their needs, and we need to educate them about broader resources and programs they can tap into. We are here to help.
Asian Americans and Pacific Islanders (AAPI) are the fastest growing minority population group in the U.S., and its older adult population is expected to increase 145% between 2010 and 2030. With older age being the largest risk factor for Alzheimer’s and other dementias, AAPI older adults are facing a public health crisis. The Alzheimer’s Association and the Buddhist Tzu Chi Foundation, also known as Tzu Chi USA, have partnered to increase awareness and education in Chinese-speaking communities. Learn more about the partnership.
Asian Americans and Pacific Islanders and Alzheimer’s
Alzheimer's Disease Facts and Figures