One of my earliest memories as a child growing up was being at my grandfather’s house in Hong Kong when his mom called. Greatgrandma Tai Tai would call several times a day to ask for my mom (her eldest granddaughter), and I would get a kick out of watching my brother James take these calls.
Because my mom was busy at work and his boyish 6 year old voice could pass for my mom’s, James was allowed to pretend to be my mom to pacify Tai Tai. So he would answer her questions about whether or not he had eaten lunch, and what he had had for lunch, speaking in a hacked-together version of Shanghainese that could pass for her native Yuanhua dialect.
These conversations were always exactly the same and repeated several times a day, so he got pretty good with repetition. For many years I believed that people would all become quirky and senile when they got to be around 80.
Stages of grief
Of course I would learn about dementia more than a decade later, just as the medical community was in the process of educating itself about the difference between normal aging and the condition that was called senile dementia. We learned about various forms of dementia but they were all basically irreversible.
As an Internal Medicine resident I began to see how devastating and frightening dementia can be at any age but particularly early onset Alzheimer’s dementia (AD) which presents in the 50s or 60s. The disease that begins insidiously as odd behaviors and memory lapses progresses rapidly to distressing changes in personality, ultimately robbing us of who we are.
Few escape the anxiety, depression and paranoia that naturally accompany their gradual recognition of what is happening. Families and loved ones live in denial for as long as possible rather than losing hope in the face of this horrifying decline, cycling endlessly through all the Kubler Ross stages before finally reaching acceptance.
ApoE4
It’s a hard reality that after three decades of research we still have few clinically effective treatment options for AD. That’s not to say no progress has been made. We have learned a great deal about the brain - how it functions and what can impact brain health. Scientific discovery often happens this way, with years of cumulative understanding with seemingly little progress at first, before key insights are validated and become clinically relevant breakthroughs.
I can begin now to mitigate my personal risk
For example we have learned that the ApoE4 gene predisposes us to Alzheimer’s disease. Individuals with one copy of ApoE4 have a 3 fold increased risk of Alzheimer’s and those with two copies can have an 8-10 fold risk. On the other hand the ApoE2 gene can be somewhat protective.
I first learned that I carry the dreaded ApoE4 gene at least six years ago. At the time it didn’t have much impact, because I thought that there wasn’t anything I could do about it anyway. Turns out I was dead wrong.
Alzheimer’s Universe
Weill Cornell Medicine neurologist Dr Richard Isaacson in NYC has been accumulating a body of evidence from the literature that supports a number of specific interventions customized to individuals in a process known as precision medicine. His tailored approach can prevent 1 in 3 Alzheimer’s cases, and delays onset in many many more.
Changes in Alzheimer’s disease such as brain accumulation of beta amyloid plaque are known to begin at least 2-3 decades before the first symptoms of memory loss. Which means that I can begin now to mitigate my personal risk, which will increase exponentially with age.
According to the Alzheimer’s Association 44 million people have been diagnosed with AD worldwide - this number should probably be higher due to underreporting or under-diagnosis. Age is the number one risk factor for AD and so just based on the aging of populations we can expect the prevalence of AD to grow to 135 million by 2050.
We need to start “flattening the curve” on AD progression now to reduce the burden on ourselves and our children in the coming decades. Dr Isaacson has been promoting the awareness of AD prevention strategies through his excellent online educational website Alzheimer’s Universe (AlzU.org).
I am signing myself up as a foot soldier in Dr Isaacson’s army to fight AD by creating the Optimal Brain Performance (OBP) program which promotes healthy brain practices through education, coaching and building community to support this work.
Let’s do this together.
Resources:
Alzheimer’s Universe is an education website hosted by Weill Cornell Medicine providing free educational material on dementia prevention based on research evidence. Take assessments to test your memory or learn more about personal risk.
Weill Cornell Medicine’s Alzheimer’s Prevention Clinic provides precision medicine consultation to individuals at high risk for dementia due to genetics or family history. A number of affiliate institutions are also listed at AlzU.org.
