Would You Want to Know a Decade Early If You Were Getting Alzheimer's?

The author pictured with her husband Dallas, who has Alzheimer's.

(Courtesy of Susan Richter Dillon)

Editor's Note: A team of researchers in Italy recently used artificial intelligence and machine learning to diagnose Alzheimer's disease on a brain scan an entire decade before symptoms show up in the patient. While some people argue that early detection is critical, others believe the knowledge would do more harm than good. LeapsMag invited contributors with opposite opinions to share their perspectives.

I first realized something was wrong with my dad when I came home for Thanksgiving 20 years ago.

I hadn't seen my family for more than a year after moving from New York to California. My father was meticulous, a multi-shower a day man, a regular Beau Brummell. He was never officially diagnosed with dementia, but it was easy to figure out after he stopped leaving the house, stopped reading, stopped being himself. My mother knew, but she never sought help. After his illness showed itself, I asked her if she considered a nursing home. "Never," she told me. "I can take care of him." And she did.

She gave herself a break once to visit me, and it was the first time she traveled separately from him since they eloped at seventeen. My brother watched my father, and it was not smooth. Dad was angry, hallucinating, and demanding his gun, which had been disposed of long ago. While Mom was visiting me in California, we played some board games. One demanded honest answers. The card read, What are you most afraid of? "Dementia," she said.

My father never saw this coming, none of us did.

Dementia ran on my mother's side. Her mother, my Nana, was senile, the popular diagnosis for older folks back then. My grandfather tried his hardest to take care of her, but she kept escaping their tidy 6th floor apartment to run away. My mother would go over every day to take care of them, but once my grandfather became ill, she took her mother into our apartment. She had two small children, Nana, and her husband in a two-bedroom flat. Nana talked to people under plates, wore tissues on her head, and tried to escape. We were on the first floor, so she could run into traffic if all eyes weren't on her. Soon, it was too much, even for my Wonder Woman mom. Nana was placed in a nursing home and died soon after.

My mother dropped dead on a NYC sidewalk two years after my father started to deteriorate. She was probably going to the store to buy milk and cigarettes. A kind stranger called 911, and a cop came to my parent's door soon after to tell my dad the news. My father cried for death, raged and ranted, then calmed down enough to come back as the dad we remembered for the week of mourning. He even ordered a Manhattan at dinner. His death came exactly a week and an hour after my mother's. He died of a broken heart. My husband cried with all his body after we left the cemetery, weeping, "Poor Buck. Poor Buck." I never saw him cry before.

Now, 18 years later, I sit here with my husband, 59 years old, as he suffers from the same hideous disease.

He is talking to someone I can't see, even laughing with him. He holds a Ph.D. in literature, taught college, had a single handicap golf game, and ate well. We never saw this coming. One day he went to type and jumbled letters came on the screen. He would show up late or early for his classes, wondering what was wrong with the students. He started running red lights. He was graciously counseled to retire, and he did, at 55. His doctor told him it was depression. The second opinion agreed. He was told to do nothing for a year, and he did. He played golf a bit, then one day he couldn't speak or think clearly. I came home from work to find him roaming the neighborhood, eyes ablaze, muttering to himself. I went on family leave. Many tests later we got the working diagnosis, but it meant nothing to him. He never reacted to the words Primary Progressive Aphasia or dementia. I was glad. If he was lucid, I knew what he would talk about doing. He told me after my dad's death that he did not want that life for himself.

I worry I may get it, too. It almost seems inescapable. Dementia has no cure, and the treatments for the symptoms are hit and miss. I thought about getting the full flight of predictive tests, but I know myself, and I scare myself into bracing for the worst. Others scare me, too, when I read their online statements about ending their lives if they learn they have it: I told my children to take me to a state where assisted suicide is legal; it's easy to overdose; I don't want to be a burden on my children. These are caregivers on social media forums. They live with the terror, eyes wide open. We have no children, but who would I burden? My sisters? My brother? Do I stay or do I go? This disease invites pandemonium. Assisted murder-suicides with caregiver spouses of those with dementia don't merit headlines, but their stories are on the sidebars. No thanks. I work on God's timeline.

There are no survivors – yet.

A diagnosis today would paralyze me and create melancholy for all who know me. I would second guess everything, I would read everything, I would cry, I would hardly live. I would be tempted to pick up that first drink after 20 plus years sober. I would even think about ending my life. It would be difficult not to consider. As a high school English teacher, I talk about suicide when I teach Hamlet. I tell the students suicide is a permanent solution to a temporary problem. Dementia isn't temporary. There are no survivors – yet.

I often think what my relatives would have done with an advance diagnosis. My grandmother was a classic worrier. She would have been beyond distraught. My father might have found that gun. My husband would have taken the right number of pills.

An advance diagnosis would paralyze me.

I appreciate the arguments for early diagnosis. Some people are made of sterner stuff. They have the mindset I lack. I admire so many who are contributing to the current conversation about dementia and are active advocates for a cure. They have found a purpose in their fate.

I don't need a test to get my ducks in a row. Loving those with dementia has prompted me to be prepared. I have a different type of bucket list: reset my priorities, slow down, be present, educate others, and make my legal plans. If and when it happens, there will be time for toast and tea and a walk along the shore. There will be time to plan for the inevitable and unenviable end. I am morbid enough to know I will recognize the purple elephant in the room. I don't want the shock and awe now. I can wait. My sisters agree. We will keep our elbows out.

Editor's Note: Consider the other side of the argument here.

Susan Richter Dillon
Susan and Dallas met in graduate school at St. John’s University. They have been married 22 years and are grateful for their circle of support in Modesto, California, and beyond.
Get our top stories twice a month
Follow us on

Astronaut and Expedition 64 Flight Engineer Soichi Noguchi of the Japan Aerospace Exploration Agency displays Extra Dwarf Pak Choi plants growing aboard the International Space Station. The plants were grown for the Veggie study which is exploring space agriculture as a way to sustain astronauts on future missions to the Moon or Mars.

Johnson Space Center/NASA

Astronauts at the International Space Station today depend on pre-packaged, freeze-dried food, plus some fresh produce thanks to regular resupply missions. This supply chain, however, will not be available on trips further out, such as the moon or Mars. So what are astronauts on long missions going to eat?

Going by the options available now, says Christel Paille, an engineer at the European Space Agency, a lunar expedition is likely to have only dehydrated foods. “So no more fresh product, and a limited amount of already hydrated product in cans.”

For the Mars mission, the situation is a bit more complex, she says. Prepackaged food could still constitute most of their food, “but combined with [on site] production of certain food products…to get them fresh.” A Mars mission isn’t right around the corner, but scientists are currently working on solutions for how to feed those astronauts. A number of boundary-pushing efforts are now underway.

Keep Reading Keep Reading
Payal Dhar
Payal is a writer based in New Delhi who has been covering science, technology, and society since 1998.

A brain expert weighs in on the cognitive biases that hold us back from adjusting to the new reality of Omicron.

Photo by Joshua Sortino on Unsplash

We are sticking our heads into the sand of reality on Omicron, and the results may be catastrophic.

Omicron is over 4 times more infectious than Delta. The Pfizer two-shot vaccine offers only 33% protection from infection. A Pfizer booster vaccine does raises protection to about 75%, but wanes to around 30-40 percent 10 weeks after the booster.

The only silver lining is that Omicron appears to cause a milder illness than Delta. Yet the World Health Organization has warned about the “mildness” narrative.

That’s because the much faster disease transmission and vaccine escape undercut the less severe overall nature of Omicron. That’s why hospitals have a large probability of being overwhelmed, as the Center for Disease Control warned, in this major Omicron wave.

Yet despite this very serious threat, we see the lack of real action. The federal government tightened international travel guidelines and is promoting boosters. Certainly, it’s crucial to get as many people to get their booster – and initial vaccine doses – as soon as possible. But the government is not taking the steps that would be the real game-changers.

Keep Reading Keep Reading
Gleb Tsipursky
Dr. Gleb Tsipursky is an internationally recognized thought leader on a mission to protect leaders from dangerous judgment errors known as cognitive biases by developing the most effective decision-making strategies. A best-selling author, he wrote Resilience: Adapt and Plan for the New Abnormal of the COVID-19 Coronavirus Pandemic and Pro Truth: A Practical Plan for Putting Truth Back Into Politics. His expertise comes from over 20 years of consulting, coaching, and speaking and training as the CEO of Disaster Avoidance Experts, and over 15 years in academia as a behavioral economist and cognitive neuroscientist. He co-founded the Pro-Truth Pledge project.