Alzheimer’s disease usually starts out quietly. You or your loved one might feel tongue-tied in the middle of a conversation, forget a name or a place, or misplace your car keys one too many times.
Studies show it’s common to write off behaviors like confusion, forgetfulness, and absentmindedness as a normal – and sometimes unavoidable – part of aging, especially within Asian communities. In fact, more than half of Asian Americans believe memory loss or a steep dip in thinking and learning skills are a normal part of aging. But in some cases, these could be early warning signs of Alzheimer’s.
Alzheimer’s is a growing concern for everybody, including those who identify as Asian, defined as anybody who can trace their racial and ethnic origins to the continent of Asia. This includes countries from the Far East, Southeast Asia, and the Indian subcontinent such as China, India, Japan, Korea, Malaysia, Thailand, and Vietnam, among others.
Here’s a look at some of the social, cultural, educational, and systematic challenges Asian people might face with Alzheimer’s.
What Does Research Say About the Link Between Alzheimer’s Disease and Asian People?
Asian Americans are the fastest-growing racial or ethnic group in the U.S. They make up more than 22 million people. In general, research shows Asian Americans are less likely to get Alzheimer’s, compared to people of other races and ethnicities. Asian people who are 65 and above account for less than 1 in 10 cases. Yet, close to half of Asian Americans worry about getting Alzheimer’s or dementia.
As Alzheimer’s cases climb, experts project the condition will triple among Asian Americans by 2030.
But since many Asian Americans tend to link Alzheimer’s symptoms to aging, they’re more likely to miss early signs of the disease and delay treatment. This could make the outcome worse.
One 2017 study found that lack of knowledge and misconceptions about Alzheimer’s are the main points of concern among the Asian American community. They’re often underprepared, especially if they were to get Alzheimer’s or become a caregiver for someone in their family.
The concern about the chance of having Alzheimer’s also varies among diverse Asian groups. For example, Korean people showed the highest concern about Alzheimer’s, followed by Filipino people, other Asian groups, Vietnamese, Chinese, and South Asian people.
But the study also points out that most Asian Americans worry about becoming a primary caregiver more than getting Alzheimer’s themselves. Only about 1 in 10 people had made plans for a situation in which they’d have the condition.
Research also shows that as the Asian population ages and grows, it’s likely that the same group will also see an uptick in Alzheimer’s cases.
What Are the Common Risk Factors for Alzheimer’s Among Asian People?
Experts say they can’t identify a specific cause for Alzheimer’s. But many things can increase your risk of having the condition, such as:
Old age. Age is the greatest risk factor for Alzheimer’s and other forms of dementia, especially among those who are 65 or older. For people of all races and ethnicities, research shows that the risk for Alzheimer’s doubles every 5 years after 65. After 85, the risk is even higher.
Diabetes. According to research, there might be a strong link between diabetes and Alzheimer’s. Asians, especially South Asians, are around 4 times more likely to get type 2 diabetes when compared to other ethnic groups. One 2021 study shows that the younger you are at the time of your diabetes diagnosis, the higher your risk of having dementia after 70 years of age.
Family history. If you have a parent, sister, or brother with Alzheimer’s, you’re more likely to get it, too. Plus, your odds are higher if more than one family member has the condition.
Brain injury. Research shows there’s a link between head injury and your risk for dementia-related disorders in the future. To avoid this, use a helmet anytime you ride a bike, and wear a seat belt to protect yourself from a collision.
Heart-related problems. There might be a strong link between brain and heart health. Besides heart disease, other health conditions can also worsen your heart. This includes high blood pressure, high cholesterol, and stroke.
To lower your risk for Alzheimer’s, work with your doctor to keep your overall health in check.
Does Stigma Play a Role in Alzheimer’s Within the Asian Community?
In general, there is very little knowledge about Alzheimer’s in most Asian communities. As a matter of fact, most Asian languages don’t have a medical word or term to describe the condition. Most descriptions translate to some form of “crazy” or a “state of confusion.”
Because of this lack of acknowledgment and tendency to believe early Alzheimer’s symptoms to be a normal part of aging, when someone gets diagnosed with Alzheimer’s, it’s more common for stigma to be attached to it.
That’s because mental health problems within many Asian communities cause a sense of embarrassment not just to the individual, but the entire family, as they might be seen as “other” or “crazy,” especially by close family members, neighbors, or those within the community. One in 4 Asian Americans say a lack of family support is a barrier to good health care.
The fear of stigma and shame often worsens the challenges one might face and could delay early diagnosis and treatment, which usually makes the outcome worse.
What Are the Challenges Asian People Face with Alzheimer’s?
Asian Americans are more likely to face unique challenges and health disparities, such as:
Lack of awareness. Studies show that only about 2 in 10 people know that mild cognitive impairment (MCI), the early stage memory loss or loss of skills like speaking and learning, is not part of normal aging. Up to 15% of people with MCI go on to have some form of dementia.
Discrimination. A 2021 report also shows that about 2 in 10 Asian Americans, like other non-white counterparts, believe discrimination might be a barrier to getting good Alzheimer’s care in America.
Language barrier. Not being able to speak or understand English and a lack of translators may limit access to health care. Language barriers may also make it hard to file the proper paperwork for health insurance among many Asian groups.
Different cultural approaches. “Asian” as an identity covers people from over 50 countries who speak over 100 languages. It may be convenient for researchers to lump people from the largest continent in the world into one. But cultural norms vary widely and can affect how someone handles a life-changing condition like Alzheimer’s. In fact, each ethnicity may have unique needs and challenges.
For example, in most doctor’s offices, medical or legal paperwork lists people by personal name first, and the family name second. But immigrants from several Asian communities, including Vietnamese, use family names first and personal names second. This can create confusion.
Distrust in clinical trials. Over 90% of Asian Americans trust doctors and other health care workers, but they have not been as representative in clinical trials. This can be traced to issues with recruitment as well as a fear or distrust of clinical trials. Concerns about experimental treatments, costs, time, and side effects rank high among their fears.
Alzheimer’s research mostly includes white participants. To make real change and meaningful improvements within Asian communities, experts need to consider the social and cultural norms that set the needs of Asian people apart.
But if those from Asian communities take part in ongoing and future clinical trials, it might help researchers find drugs or treatments that work and help reduce the impact of Alzheimer’s on the communities.
What Role Does Caregiving Play Among Asian People?
In most Asian cultures, filial piety, or respect for elders, is a deep-rooted custom where it’s one’s duty and responsibility to care for the parents or an older person who is close family if they get sick or need care. Several Asian cultures share a worldview that if something affects one person, it affects the entire family.
In terms of Alzheimer’s, if an older person starts to show signs of aging or the condition, a close relative, usually adult female children who may be daughters or daughters-in-law, take on the role of caregiving.
This can affect many parts of care, including medical treatments, getting professional care, and end-of-life care.
Plus, if you’re caring for someone with Alzheimer’s, it takes a lot of time and attention. As they move into middle to late stages of the condition, you may need to constantly supervise and give around-the-clock care to keep them safe. This could take a mental and physical toll on you as the caregiver.
In such cases, especially if it’s beyond your physical abilities, talk to the doctor about options. You may need to hire professional help for at-home care or discuss options for long-term care at a facility.
It may be hard to make this decision. In most Asian cultures, there might be a lot of shame and guilt involved in asking for help. But in the long run, it may be the safest option for you and your loved one, as they’ll get the care they need.
What Resources Can Help?
If you’re an Asian American caregiver to a loved one with Alzheimer’s, or you simply want to educate yourself about the condition and what to expect, these resources might help:
Alzheimer's Association. They have detailed information about Alzheimer’s, medical treatment, and information for caregivers. Information is available in Chinese, Japanese, Korean, and Vietnamese languages.
Family Caregiver Alliance – National Center on Caregiving. They work with families who are caring for someone with Alzheimer’s or other brain-related problems. They provide information on caregiving, legal advice if you or a family member is unable to make decisions for themselves, and assist with caregiving for those who are 60 or older regardless of income level or stage of the diagnosis. Information is available in English, Spanish, Cantonese, and Mandarin.
National Asian Pacific Center on Aging. They provide support and assistance to older adults and caregivers within the Asian and Pacific Islander communities. They specialize in elder justice, dementia, and long-term services, among other things.