Closing the gap in Alzheimer’s research

UBC researchers are working to increase Asian representation in Alzheimer’s research, improving disease prevention, diagnosis and care.

While people of Asian ancestry make up more than 16 per cent of Canada’s population, they’ve been vastly underrepresented in Alzheimer’s research to date, comprising less than 3 per cent of participants in clinical trials and national data sets. UBC researchers are working to close that gap.

Dr. Robin Hsiung, associate professor of neurology and researcher at the Djavad Mowafaghian Centre for Brain Health, is leading the Vancouver site for the Asian Cohort for Alzheimer’s Disease (ACAD) project — the first major genomics study of Alzheimer’s disease in Asian Canadians and Asian Americans. Together with 16 academic medical centres across Canada and the United States, the researchers are shedding light on the lifestyle and genetic risk factors for Alzheimer’s disease that are specific to people of Asian ancestry.

We spoke with Dr. Hsiung about why addressing racial inequities in Alzheimer’s research is so important, and how it will lead to better Alzheimer’s care for Asian Canadians.

Why study the genetics of Alzheimer’s disease with a focus on Asian Canadians?

The causes of Alzheimer’s are complex. Other than a few rare disease-causing genes in familial Alzheimer’s disease, the risk factors for late-life onset Alzheimer’s disease involve an intricate array of factors including multiple genetic and non-genetic pathways, a person’s lifestyle and their environment. Furthermore, there is strong evidence to suggest that the pathways and risk factors for developing Alzheimer’s disease may differ by race.

Part of the difficulty in identifying a cure and better treatments for Alzheimer’s is that we don’t have enough information to understand how the disease affects different populations around the globe. The Asian community is one of the largest and fastest-growing populations in Canada, but they’ve been vastly underrepresented in Alzheimer’s research. This lack of data creates gaps in our understanding of why Alzheimer’s develops, how it progresses, and possible treatments that are specific to people of Asian ancestry. To solve this puzzle, we need data that represents people from all different backgrounds.

How does Alzheimer’s disease vary in people of different racial backgrounds?

The short answer is that we don’t have a good understanding of this yet, because the large majority of Alzheimer’s research has been based on studies from North America and Europe that primarily involved people of Caucasian descent.

What we do know is that a lot of other diseases can have different presentations and risk factors across racial backgrounds, and early evidence suggests this is also true for Alzheimer’s disease. For instance, one recent study suggested that African American people are twice as likely to develop Alzheimer’s disease as Caucasian people and that some of their genetic risk factors may be distinct from those of white people. Another study done in Japan, China and South Korea identified several rare genetic features that are associated with higher risks of Alzheimer’s disease among Asian people. These studies really highlight how important it is to study Alzheimer’s disease in different populations, and we’ve only just begun to scratch the surface.

How will ACAD address the underrepresentation of Asian Canadians in Alzheimer’s research?

Together with partners across Canada and the United States, we’re building the first major Alzheimer’s disease genetics cohort for people of Asian ancestry. Our team is recruiting adults aged 60 and older, with or without any signs of Alzheimer’s disease from Chinese, Korean and Vietnamese ancestry. Participants complete a lifestyle and demographic questionnaire, undergo a cognitive assessment, and provide a saliva sample or optional blood sample. All of the data is collected anonymously and securely. We’ll use this first-of-its-kind dataset to better understand how Alzheimer’s disease develops in people of Asian ancestry, with an aim to improve strategies for prevention, diagnosis and care.

How will this project improve Alzheimer’s care?

We’re identifying the risk factors for Alzheimer’s disease that are specific to Asian Canadians and Asian Americans. Our goal is to develop blood biomarker benchmarks and polygenic risk score models to measure the risk for Alzheimer’s disease in the Asian community. We will also examine non-genetic biomarkers, in combination with lifestyle and clinical information, to look for clues to other contributing factors to Alzheimer’s disease.

Our ultimate goal is to develop more reliable diagnostic tests and more accurate risk predictions that allow us to prevent and treat Alzheimer’s earlier, and to develop more effective treatments and health delivery for the Asian Canadian community.

How are you engaging Asian Canadians in the project?

There’s a lot of stigma and myths around Alzheimer’s disease, particularly within the Asian community. We are actively engaging local community leaders to build trust and awareness, and to help people understand how transformative this project could be for Alzheimer’s care within the Asian community.

Our team is using community-based participatory research principles and we’re also training bilingual staff to overcome language barriers. This allows us to communicate with participants in their preferred language and ensures that our outreach materials are culturally sensitive.

Published: September 11, 2023