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I Carry The Highest Genetic Risk For Alzheimer’s—Here’s What I’m Doing About It

Elen Castellanos
Author:
August 03, 2026
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Image by Elen Castellanos x mbg creative
August 03, 2026
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While some health issues are visible to the outside world, many people face chronic conditions that don't have externally visible signs or symptoms—also known as invisible illnesses. In this mindbodygreen series, we're giving individuals with invisible illnesses a platform to share their personal experiences. Our hope is their stories will shed light on these conditions and offer solidarity to others facing similar situations.

My father was diagnosed with Alzheimer's when he was 68 years old. He died in 2020, at 75.

Before his diagnosis, I thought I understood what Alzheimer's was. I expected him to forget things, for his memory to slow decline. But as I witnessed the full progression of the disease over those 7 years, I watched the man I knew become bedridden and completely dependent on others for everything.

Watching that happen changed me. It also started me on a path of trying to understand what Alzheimer's actually is, how it works, and whether there was anything I could do to protect myself.

Learning my risk

In late 2024, I decided to get tested for the APOE gene. I learned that certain variants of this gene are associated with an increased risk of developing Alzheimer's. One copy of the APOE4 gene doubles or triples the risk of Alzheimer’s, and two copies increases risk roughly 10-fold.

It took me four years to get tested after my dad's diagnosis because I genuinely didn't understand enough about it at first. I had to educate myself before I could even ask the right questions.

When I decided to get tested, I did it through Function Health, a platform I was already using to track my blood biomarkers. I paid a little extra to add the APOE genotype to my panel.

I'll never forget that night in October 2024 when I opened the app and saw my result: APOE4/4, meaning I had two copies of the high-risk gene. I didn't panic in that moment. I was just shocked. The chance of having two copies of the APOE4 gene are slim, so I genuinely hadn't expected it. We also didn't know what my father's genotype was, so I had no frame of reference going in.

What followed was fear. Real fear. Because I had watched my father go through everything, I knew what the progression looked like. And when you know that there's no treatment, no cure, no way to reverse it, your mind goes to a dark place very quickly. I remember thinking: is this just the path I'm going to be on?

What I changed & why

The first physician I spoke to about my result was my brother. He helped walk me back from that ledge, telling me, "Just because you carry the gene doesn't mean you're going to get Alzheimer's. It increases your risk, but there is a lot you can do."

I began casting a very wide net to find a doctor who could help me. I reached out to research programs, women's brain health initiatives, and clinicians all over the country. Through my brother, I found out about Dr. Kellyann Niotis, the lead physician at Preventative Neurology and the director of Parkinson’s and Lewy Body Dementia research at the Institute for Neurodegenerative Diseases, led by Dr. Richard Isaacson.

It took me some time to get an appointment with Niotis. The first few times I reached out she kindly said they weren’t taking new patients, but to try back in a couple of months. In March of 2025, the possibility of working with Niotis became a reality and my first exploratory call was scheduled for the end of the month. 

In the months after we first met, I did comprehensive testing, including MRIs, blood work, a hearing check, a sleep study, a smell test and various cognitive assessments. That July, we had our first official call to go over everything. Based on my numbers and risk profile, Niotis built me a completely personalized, comprehensive prevention plan. Here are some of the changes I've made in the last year:

I stopped drinking alcohol

By the time I met with Niotis, I had already made one major change on my own. I started decreasing the amount of alcohol I was consuming. Very soon after the call with Niotis,I eliminated it completely.I learned how toxic alcohol is for the brain especially for someone with two copies of the APOE4 gene, and that was enough for me to change that habit. 

Alcohol was so woven into my social life, which made cutting it out difficult; however, I now had a “why.”. One of my best girlfriends lives a block away from me and now when we meet for a glass of wine, I bring myself a cup of tea. Instead of bringing wine to a party as a hostess gift, I bring a bottle of olive oil. Same traditions, just different substances.

Cardiovascular health

When I started with Niotis, my cardio biomarkers weren't where they needed to be. She started me on a low-dose statin and added Zetia to bring my ApoB down to an optimal level. My total cholesterol was at 223 and it is now at 122. My ApoB had been over 100 and the medication helped me bring it down to under 50. These numbers matter enormously for brain health.

I hear a lot of people say they'd never go on a statin, and while I understand the hesitation to add medication, having an optimal ApoB is more important. Statins may be what some of us need to get our ApoB in the range we want. Speaking to a physician about ways to bring those numbers down is critical. Educating ourselves about options and self-advocacy is key.

Sleep

My sleep was not in good shape when I started this journey. I began working with Empower Sleep, a platform that diagnosed me with mild sleep apnea. To help with this, I began elevating the head of my mattress, started using a nose strip. I also built a healthier bedtime routine, which includes getting morning sunlight, avoiding screens before bed, and keeping my sleep and wake times consistent.

The biggest change to my sleep quality came from cutting out alcohol. I saw the difference from that immediately.

Mediterranean diet

We looked at all my numbers, including my omega-3 to omega-6 ratio, which is essentially, the balance between anti-inflammatory fats (omega-3s) and pro-inflammatory ones (omega-6s, found in many processed foods and vegetable oils). The goal was to shift that balance in a more brain-friendly direction. The biggest way to do that was by following a more Mediterranean-style diet.

I now eat more fatty fish, and have added two tablespoons of ground flaxseed and two tablespoons of high-quality olive oil every day. As my friends will tell you, I have become completely obsessed with olive oil. I try all different types, mostly from small producers in California and Greece. Opening one of those bottles is like opening a really good bottle of wine for me. I use Kosterina in the blue bottle for cooking and save the premium oils for salads, toast, dressings, and olive oil shots.

The Mediterranean diet also travels well. When I go out to dinner or lunch, I can order things that fit the protocol without stress. If I want dessert once a week and we split something, that's fine. I'm so consistent the rest of the time that having a sweet treat once in a while doesn't worry me.

Exercise

Niotis connected me with Beth Lewis, a trainer who became the anchor of my movement practice. I was exercising before I began this journey, but I became much more diligent about it. I work out seven days a week now, though not all of it is intense. I follow Lewis's strength training circuits, rowing programs (including HIIT intervals and zone 2 cardio), step classes, and dance-based workouts seven days a week.

What I love about the movement Lewis designs is that so much of it involves cognitive load—remembering sequences, moving to the beat of music, coordinating patterns—and that's intentional. The brain benefits from that kind of challenge just as much as the body does.

Oral health

I was surprised to learn how closely connected oral health is to brain inflammation. I was never a consistent flosser, but now I do it every day and see my dentist every six months. It's a small thing that turns out not to be small at all.

The results that keep me going

Making these changes has taken a lot of dedication and hard work, but I can see how much it is helping, both in my daily symptoms and my tests. I wake up with so much more energy. I can concentrate better. My brain inflammation biomarkers have decreased by 30%. My ApoB is under 50. My InBody scan from this June shows I gained a pound of muscle since July of 2025. My sleep is better than it has been in years.

When I see those numbers, I feel something I didn't expect to feel when I first got my results: excitement. Because this works. I am living proof that it works. And these are not exotic interventions. They are things that, for the most part, anyone can do.

How I stay sane & continue living life to the fullest

At the beginning, I was very rigid with these habits. I was so focused on doing everything right that I would stress about going to bed late or eating something off-plan. I don't live that way anymore.

About 90% of the time, I'm getting to bed when I need to. But if I go out to dinner with my husband and stay up a little later, that's okay. Spending time with the people I love is part of brain health too. Social connection is one of the most important factors in cognitive longevity, and I'm not willing to sacrifice it in the name of a perfect sleep score.

And I want people to know you don't have to do it the way I did. I'm someone who, when I commit to something, goes all in. But you can start with one thing. Build the habit. Once it becomes part of your life, add the next thing. Habit stacking over time is how real change happens.

My biomarkers are also being tracked as part of ongoing Alzheimer's research through the Institute for Neurodegenerative Diseases. Participating in this program and sharing my story feels like a way for me to give back to doctors like Niotis and Isaacson by helping them continue to advance the field of preventive neurology. Knowing that what I'm doing might contribute something useful means a great deal to me.

What I'd tell someone thinking about getting tested

I would never push anyone to get tested. It's a deeply personal decision, and not everyone is in the same mindset about it. Knowledge is power, and getting tested was the most empowering thing I could do. But I understand that's not true for everyone.

Regardless of your genetic makeup, I want to encourage people to optimize for brain health right now. Anyone can get Alzheimer's. Anyone can experience cognitive decline. And there are things all of us can do to protect our brains, whether or not we've ever had a test.

Get your hearing checked. Hearing loss is a modifiable risk factor for Alzheimer's, and most people don't think about it. It's relatively easy, and insurance may cover it. Walk with a friend. The combination of movement and social connection is genuinely powerful. Play mahjong, take a dance class, learn something that requires you to remember sequences. These things are not just fun. They are medicine.

I also want to mention RetainYourBrain, a free online tool that Isaacson and Niotis have both been involved with. It offers 21- to 28-day habit-building routines across sleep, nutrition, cognitive activities, exercise and more. . It's how I finally built a consistent reading habit, something I always wanted to do but never made time for.

The takeaway

Carrying the highest genetic risk for Alzheimer's could have felt like a sentence. Instead, it became the catalyst for the most intentional period of my life. The protocol I built with my team, cardiovascular health, sleep, diet, movement, oral health, has moved my numbers in ways I can see and feel.

If you're worried about your brain health, I encourage you to just pick somewhere to start. The path forward isn't about perfection. It's about showing up for your brain the same way you'd show up for any other part of your health.