Turns out, I’m APoE4 positive

My Grandpa disappeared into the vortex of Alzheimer’s disease over the course of more than a decade before he finally left this world in a morphine nap at the age of 89. It was a terrible thing, to watch the journey from his first noticeable lapses—“My onboard computer is on the fritz,” he would say in his seventies—to the inevitable loss of all grip on reality and ability to function in the world.

At the end, he couldn’t make sense of anyone or anything around him. But he still had his personality. He flirted with me outrageously the last time I saw him. He was always a flirt, and he no longer grasped the concept that I was his granddaughter. He was smiling and joking and making wry if nonsensical comments. People talk about those in late stage Alzheimer’s as being “no longer there,” but he was still in there somewhere. He just no longer had a functioning onboard computer.

He was an independent person, so it was hard to see his independence slowly revoked. During his last few years of living at home he required daily babysitters. My aunt and uncle had to give up their own independence in order to be with him most of the time, and when they went on vacation they had to hire someone to stay with him. Eventually it got to be too much for them, and he spent his final years in a memory care home nearby. My cousin bought his old house and the land it stood on in order to fund his longterm care.

Of course, having a genetic predisposition for Alzheimer’s has been in the back of my mind since Grandpa was diagnosed. But what can you do about your genes? Not much.

So when my recent genetic panel for my new healthcare provider came back with one copy of the APoE4 gene (with 96% certainty), it was not a shocker. But it was a confirmation of something I had really hoped was not true. With one copy of the gene I have a roughly 30% chance of developing Alzheimer’s, which is more than three times as likely as someone without the gene.

Those with two copies are more than 50% likely to develop the disease, so I can take some comfort in the fact that I still have 70% chance of NOT experiencing dementia. However, I don’t like those odds.

No cure?

The current treatments for Alzheimer’s are completely ineffective at reversing the progress of the disease. The best they can do are moderate some of the worst symptoms and, perhaps unhelpfully, prolong life. Who wants to extend a life of dementia? While we were all sad to lose Grandpa Frank, we also breathed a collective sigh of relief. His confusion, fear, and frustration were finally over.

My new doctor offered to refer me for more accurate genetic testing so that I could be 100% certain I’m predisposed to this terrible disease. My question was, why would 100% certainty make a difference? I want to do everything I can to prevent the disease whether I’m totally certain or not.

So, is there something I can do to proactively prevent dementia? It turns out there is good science behind a number of lifestyle choices and supplements that may improve my odds. My doctor prescribed me a book to read as a first step: The End of Alzheimer’s.

Based on 30 years of research that culminated with a revolutionary paper published in 2014, the book breaks down the factors that contribute to the disease into three categories: Inflammation, exposure to toxins, and nutritional deficiencies. It then offers tested strategies to address each of these.

These are all things that can be largely addressed through diet, exercise, sleep, and supplements. Not surprisingly, some of the high level recommendations are aligned to what I am already doing for cancer prevention. No gluten. Minimize sugar and dairy. Avoid alcohol, eat fatty fish and pasture-raised meat. Basically, an anti-inflammatory, nutrient-rich diet. Which is probably the best diet for anyone, regardless of genetic risks.

The paradox of longterm care

Grandpa Frank could not afford the memory care home where he landed without selling his house and property. He had no longterm care insurance, and no one in the family was wealthy enough to pay for it. His lifetime of saving was sucked dry in a couple of years.

He was lucky to have a couple of adult children and grandchildren to manage the process of selling his house and getting him into the right place. I don’t have kids or siblings, so if my husband is unable to do those things for me, who will?

I hope my husband will be there to make those decisions if the time comes. But he may not be. So now is the time for me to invest in longterm care insurance, but this may be complicated. I’ve already had breast cancer, I’m in my fifties, and I hope to retire in a different country. I need something portable and flexible.

So, now I am in research mode. I am reading the book. I will work with my doctor to come up with the best protocol I can. I will find out what longterm care insurance is all about, and we already have a plan to get our wills and powers of attorney in order. The only way I will be able to deal with the worst, if it happens, is to be prepared.

What would you do to reduce your risk?

There’s no guarantee that following anti-Alzheimer’s diet and supplement protocols will result in me dodging the proverbial bullet. All I have to go on are some stats and some case studies backed by research. But everyone has a unique set of factors that trigger dementia, and what works for some may not work for me.

Would you be willing to give up donuts if you knew that they might be a contributing factor to future dementia? Would you give them up even if you weren’t sure it would make a difference? Would you give up pizza? Wine?

I once thought that giving up any of those things would seriously cramp my style. I’ve never been a super-frequent donut eater, but I don’t like the idea that they are “forbidden.” Pizza has been a favorite food since childhood. And wine? Well, let’s just say we have had a serious, longterm intimate relationship, but we’re currently on a break.

Donuts represent a triad of problematic factors that increase the inflammation associate with developing Alzheimer’s and so many other diseases. Sugar and carbs, which in donut-sized doses trigger an immediate inflammatory response, and over time can increase insulin resistance—another marker of Alzheimer’s. Gluten from the flour can lead to “leaky gut” and systemic inflammation. The vegetable oil it is fried in is also inflammatory, especially if you’re not eating a lot of oily fish to balance it out.

Once I identified my gluten sensitivity (also now confirmed by genes) a few years ago, baked goods have been off the menu for the most part. But I do still indulge in gluten-free pizza and some items containing sugar. I will eat fries now and then, knowing they were probably fried in inflammatory vegetable oil. I’m not perfect, but I’ve come a long way from my bar food diet of the early 2010s.

The sad truth is that many of the foods that those of us born in the twentieth century grew up eating are the very foods that promote inflammation and ultimately fuel Alzheimer’s and many other diseases. The parallels between the anti-Alzheimer’s diet and the anti-cancer diet is remarkable. To simplify it, eat foods that humans ate before agricultural and factory food production. Easy, right?

It would be easier if the enemies weren’t absolutely everywhere. You probably don’t know how difficult it is to avoid gluten unless you’ve tried. Most restaurants may have only one item (a salad), and that may still have hidden gluten if they are not actively working to avoid it. At Starbuck’s I can eat the egg bites. That’s it. I miss the pumpkin bread! But they don’t make a gluten-free version and it is packed with sugar and vegetable oil.

The idea of going full-on sugar-free is a little daunting. After my foray into Keto in 2020, I’ve slowly let sugar in, in small quantities. But even when it is only a couple of gummy vitamins, my favorite electrolytes, and a preferred brand of mayo…it is addictive. No need to munch on candy bars or drink soda. It is literally everywhere. Doing the Whole30 diet was a real revelation. I thought I wasn’t eating sugar, but indeed I was.

To me, not slipping into dementia is worth any number of difficult lifestyle changes. I’m going to turn into one of those annoyingly fit people who interrogates waiters, I’m afraid. Better to be “that person” than no longer really a person at all.