I am the 56-year-old son of two parents who died with Alzheimer’s disease.
Almost every day for many years after both my parents were gone, I feared I would eventually succumb to this awful disease, too. Yes, I know this wasn’t the healthiest response. I imagined my risk of developing Alzheimer’s disease (AD) as an imaginary balance scale, with my genetic predisposition acting like a thousand-pound weight on one side. On the other side of the scale… I honestly had no idea I could even put anything on the other side, let alone tip the scale in my favor.
Your genes may increase your risk of getting a disease, like Alzheimer’s disease, but they don’t control your fate.
Since then, I’ve learned that your genes may increase your risk of getting a disease, like Alzheimer’s disease, but they don’t control your fate. Not by a long shot. AD is rarely the genetically deterministic time bomb I thought it was.[i] I wish I understood this from the beginning.
For some reason, I never thought much about my genetic risk of getting dementia while my parents were alive. Maybe I didn’t do this because I was relatively young (I like to think I am still relatively young, but I was more relatively young then). Maybe I was more focused on them than on myself or I was consumed with starting a business and raising a young family.
My mom died first, but soon after the passing of my dad, the obvious question hit me like a ton of bricks: Both my parents died with Alzheimer’s disease, so what are the odds that I get it, too?
While understanding the exact percentage chance of developing Alzheimer’s disease (AD) is impossible, it didn’t take much Googling to discover that my risk was much higher than the general population’s risk. This heightened risk was affirmed by Dr. Ronald Petersen, who not only served as my parents’ doctor, but is also the Director of Mayo Clinic’s Alzheimer’s Disease Research Center.
According to Dr. Petersen, if you have a first-degree relative with Alzheimer’s disease, your risk may be up to 3-4 times the risk of the general population.[ii] The Alzheimer’s Association states that about 1 in 9 people 65 and older has AD.[iii] These numbers were not reassuring, of course.
If you have or had a parent or other close relative with AD or any other type of dementia, or maybe they had cancer, diabetes, heart disease, or any other disease, you may be worried about your genetic risk like I was worried about mine. Even without any genetic risk, you are probably still concerned about getting dementia.
A healthy lifestyle, something each of us can control at some level, is associated with a lower risk of dementia, regardless of one’s genetic risk.
There are countless studies that offer varying estimates of what percentage risk of AD is tied to genetic factors versus more controllable factors, like lifestyle and environmental factors. Some studies proport that most AD risk is tied to genetics and others report the opposite. The Lancet Commission, an organization that publishes health information to positively affect health policy and improve practice, falls in the middle. They published a report in 2020 that stated that 12 modifiable risk factors might prevent or delay up to 40% of dementia cases.[iv]
We don’t have consensus on these numbers, but we don’t really need it. Regardless of the figures you choose to believe, the bottom line remains the same: A healthy lifestyle, something each of us can control at some level, is associated with a lower risk of dementia, regardless of one’s genetic risk.[v]
You can make choices that decrease your personal risk of getting dementia. Maybe you can prevent the onset altogether, which would be incredible. Maybe your choices result in getting dementia later in life or decreasing the speed at which it progresses. That’s a lot better than the opposite.
The Alzheimer’s Association agrees: “Although age, genetics, and family history cannot be changed, some risk factors can be changed or modified to reduce the risk of cognitive decline and dementia.”[vi]
The changes in your brain that ultimately lead to Alzheimer’s disease begin years, and probably decades before symptoms arise.
The fact that you can impact the risk of getting dementia is a relatively new idea in the world of Alzheimer’s disease, but it should not be shocking. Do you believe you can impact your risk of cardiovascular disease even though you cannot control all aspects of that outcome? Do you believe you can impact whether you suffer from diabetes even though you may not be able to completely control whether that happens? I believe the answers to these questions for most people are a resounding and unequivocal YES! That, my friends, is incredibly empowering.
Speaking of cardiovascular disease and diabetes, did you know there is considerable evidence that links brain health to heart health? Many experts also refer to AD as diabetes of the brain. Understanding how to decrease your chances of getting cardiovascular disease and diabetes means you already know some ways to take care of your brain and reduce your risk of dementia. Focusing on your diet and maintaining a regular exercise regimen are two examples of actions you can take to lower your risk.
None of this means we can cure, or with 100% certainty, prevent AD. Even if you have a small genetic risk and optimize everything in your control, you may still develop it. You may have a high genetic risk and make all the wrong lifestyle choices and not get it. Although we don’t have complete control over whether we get AD, we can and should still strive to decrease the risk of getting it.
You don’t have to add any qualifiers when stating you can decrease your risk of AD. There is no need to say, “You can likely decrease your risk.” or “You can maybe decrease your risk.” For some of you, however, you may believe that AD is an older person’s disease (age is the biggest risk factor, after all) and is not something to worry about yet.
The truth is that it is never too early, and it’s never too late to protect the health of your brain, regardless of your genetic risk. [vii]
There are two reasons this is a dangerous belief. First, it’s well established that the changes in your brain that ultimately lead to Alzheimer’s disease begin years, and probably decades before symptoms arise.[viii] Now is exactly the right time to balance that risk.
Additionally, it’s crucial to acknowledge the prevalence of early-onset Alzheimer’s disease. Sometimes referred to as young-onset Alzheimer’s disease, this form of dementia impacts people under the age of 65, comprising 5-6% of people with Alzheimer’s disease.[ix] There is some data that suggests this is becoming more common, too.
I hope this a good, empowered, positive-feeling place to leave you for this first article.
Now that you know you can decrease your risk of getting Alzheimer’s disease, regardless of your genetics, you probably want to know WHAT you need to do. The specific actions, however, are going to be different for each of us. To figure out what YOU need to do, you need some data.
In the next English Rose Beat Newsletter, I’ll share information about developing a baseline—an assessment of your current state. I’ll share information about genetic markers and what they mean in terms of one’s Alzheimer’s risk. I’ll also share some information about cognitive tests and modifiable risks. Together, this data will bring you closer to understanding which levers might be the best ones for you to pull to decrease your risk of Alzheimer’s disease.
[i] Only approximately 1% of people with Alzheimer’s disease have one of the three deterministic genes that dramatically increases the person’s risk of getting Alzheimer’s disease. National Institute on Aging. “Alzheimer’s Disease Genetics Fact Sheet,” n.d. https://www.nia.nih.gov/health/genetics-and-family-history/alzheimers-disease-genetics-fact-sheet.
[ii] Note that the risk of getting Alzheimer’s disease is not uniform across gender and race. Balzer, Deb. “Mayo Clinic Minute: Reducing Risk of Alzheimer’s Disease in Families.” Mayo Clinic News Network, November 13, 2023. https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-reducing-risk-of-alzheimers-disease-in-families/.
[iii] Alzheimer’s Disease and Dementia. “Alzheimer’s Disease Facts and Figures,” n.d. https://www.alz.org/alzheimers-dementia/facts-figures.
[iv] Livingston, Gill, MD. “Dementia Prevention, Intervention, and Care: 2020 Report of the Lancet Commission.” The Lancet, July 30, 2020. https://www.thelancet.com/article/S0140-6736(20)30367-6/fulltext.
[v] Lourida I, Hannon E, Littlejohns TJ, Langa KM, Hyppönen E, Kuzma E, Llewellyn DJ. Association of Lifestyle and Genetic Risk With Incidence of Dementia. JAMA. 2019 Aug 6;322(5):430-437. doi: 10.1001/jama.2019.9879. PMID: 31302669; PMCID: PMC6628594. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6628594/.
[vi] Alzheimer’s Association. 2023 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2023;19(4). DOI 10.1002/Alzheimer’s disease.13016. https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf.
[vii] The World Alzheimer’s Month 2023 campaign, “Never too early, never too late,” centered around risk factors and risk reduction. “ADI – Never Too Early, Never Too Late,” n.d. https://www.alzint.org/get-involved/world-alzheimers-month/never-too-early-never-too-late/#:~:text=The%20%27Never%20too%20early%2C%20never,prevent%2C%20the%20onset%20of%20dementia.
[viii] Mayo Clinic. “Alzheimer’s Stages: How the Disease Progresses,” June 7, 2023. https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers-stages/art-20048448.
[ix] Mayo Clinic. “Young-Onset Alzheimer’s: When Symptoms Begin before Age 65,” April 29, 2022. https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers/art-20048356.