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.
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.
New study: Hotter nights, climate change, cause sleep loss with some affected more than others
According to a new study, sleep is impaired with temperatures over 50 degrees, and temps higher than 77 degrees reduce the chances of getting seven hours.
Data from the National Sleep Foundation finds that the optimal bedroom temperature for sleep is around 65 degrees Fahrenheit. But we may be getting fewer hours of "good sleepin’ weather" as the climate warms, according to a recent paper from researchers at the University of Copenhagen, Denmark.
Published in One Earth, the study finds that heat related to climate change could provide a “pathway” to sleep deprivation. The authors say the effect is “substantially larger” for those in lower-income countries. Hours of sleep decline when nighttime temperature exceeds 50 degrees, and temps higher than 77 reduce the chances of sleeping for seven hours by 3.5 percent. Even small losses associated with rising temperatures contribute significantly to people not getting enough sleep.
We’re affected by high temperatures at night because body temperature becomes more sensitive to the environment when slumbering. “Mechanisms that control for thermal regulation become more disordered during sleep,” explains Clete Kushida, a neurologist, professor of psychiatry at Stanford University and sleep medicine clinician.
The study finds that women and older adults are especially vulnerable. Worldwide, the elderly lost over twice as much sleep per degree of warming compared to younger people. This phenomenon was apparent between the ages of 60 and 70, and it increased beyond age 70. “The mechanism for balancing temperatures appears to be more affected with age,” Kushida adds.
Others disproportionately affected include those who live in regions with more greenhouse gas (GHG) emissions, which accelerate climate change, and people in hotter locales will lose more sleep per degree of warming, according to the study, with suboptimal temperatures potentially eroding 50 to 58 hours of sleep per person per year. One might think that those in warmer countries can adapt to the heat, but the researchers found no evidence for such adjustments. “We actually found those living in the warmest climate regions were impacted over twice as much as those in the coldest climate regions,” says the study's lead author, Kelton Minor, a Ph.D. candidate at the University of Copenhagen’s Center for Social Data Science.
Short sleep can reduce cognitive performance and productivity, increase absenteeism from work or school, and lead to a host of other physical and psychosocial problems. These issues include a compromised immune system, hypertension, depression, anger and suicide, say the study’s authors. According to a fact sheet by the U.S. Centers for Disease Control and Prevention, a third of U.S. adults already report sleeping fewer hours than the recommended amount, even though sufficient sleep “is not a luxury—it is something people need for good health.”
Equitable policy and planning are needed to ensure equal access to cooling technologies in a warming world.
Beyond global health, a sleep-deprived world will impact the economy as the climate warms. “Less productivity at work, associated with sleep loss or deprivation, would result in more sick days on a global scale, not just in individual countries,” Kushida says.
Unlike previous research that measured sleep patterns with self-reported surveys and controlled lab experiments, the study in One Earth offers a global analysis that relies on sleep-tracking wristbands that link more than seven million sleep records of 47,628 adults across 68 countries to local and daily meteorological data, offering new insight into the environmental impact on human sleep. Controlling for individual, seasonal and time-varying confounds, researchers found the main way that higher temperatures shorten slumber is by delaying sleep onset.
Heat effects on sleep were seen in industrialized countries including those with access to air conditioning, notes the study. Air conditioning may buffer high indoor temperatures, but they also increase GHG emissions and ambient heat displacement, thereby exacerbating the unequal burdens of global and local warming. Continued urbanization is expected to contribute to these problems.
Previous sleep studies have found an inverse U-shaped response to temperature in highly controlled settings, with subjects sleeping worse when room temperatures were either too cold or too warm. However, “people appear far better at adapting to colder outside temperatures than hotter conditions,” says Minor.
Although there are ways of countering the heat effect, some populations have more access to them. “Air conditioning can help with the effect of higher temperature, but not all individuals can afford air conditioners,” says Kushida. He points out that this could drive even greater inequity between higher- and lower-income countries.
Equitable policy and planning are needed to ensure equal access to cooling technologies in a warming world. “Clean and renewable energy systems and interventions will be needed to mitigate and adapt to ongoing climate warming,” Minor says. Future research should investigate “policy, planning and design innovation,” which could reduce the impact of sweltering temperatures on a good night’s sleep for the good of individuals, society and our planet, asserts the study.
Unabated and on its current trajectory, by 2099 suboptimal temperatures could shave 50 to 58 hours of sleep per person per year, predict the study authors. “Down the road, as technology develops, there might be ways of enabling people to adapt on a large scale to these higher temperatures,” says Kushida. “Right now, it’s not there.”
Why we need to get serious about ending aging
With the population of older people projected to grow dramatically, and the cost of healthcare with it, the future welfare of the country may depend on solving aging, writes philosopher Ingemar Patrick Linden.
It is widely acknowledged that even a small advance in anti-aging science could yield benefits in terms of healthy years that the traditional paradigm of targeting specific diseases is not likely to produce. A more youthful population would also be less vulnerable to epidemics. Approximately 93 percent of all COVID-19 deaths reported in the U.S. occurred among those aged 50 or older. The potential economic benefits would be tremendous. A more youthful population would consume less medical resources and be able to work longer. A recent study published in Nature estimates that a slowdown in aging that increases life expectancy by one year would save $38 trillion per year for the U.S. alone.
A societal effort to understand, slow down, arrest or even reverse aging of at least the size of our response to COVID-19 would therefore be a rational commitment. In fact, given that America’s older population is projected to grow dramatically, and the cost of healthcare with it, it is not an overstatement to say that the future welfare of the country may depend on solving aging.
This year, the kingdom of Saudi Arabia has announced that it will spend up to 1 billion dollars per year on science with the potential to slow down the aging process. We have also seen important investments from billionaires like Google co-founder Larry Page, Amazon founder Jeff Bezos, business magnate Larry Ellison, and PayPal co-founder Peter Thiel.
The U.S. government, however, is lagging: The National Institutes of Health spent less than one percent of its $43 billion budget for the fiscal year of 2021 on the National Institute on Aging’s Division of Aging Biology. When you visit the division’s webpage you find that their mission statement carefully omits any mention of the possibility of slowing down the aging process.
There is a lack of political will and leadership on the issue, and the idea that we should seek to do something about aging is generally met with a great deal of suspicion and trepidation. In a large representative study conducted by the Pew Research Center in 2013, only 38% of the respondents said that they would want a treatment that could slow the aging process and allow them to live at least 120 years. Apparently, most people prefer, or at least do not mind, to age and die within a natural lifespan. This result has been confirmed by smaller studies and it is, I think, surprising. Are we not supposed to live in a youth-culture? Are people not supposed to want to stay young and alive forever? Is self-preservation not the strong drive we have always assumed it to be?
We are inundated and saturated with an ideology of death-acceptance.
In my book, The Case against Death, I suggest that we have been culturally conditioned to think that it is virtuous to accept aging and death. We are taught to believe that although aging and death seem gruesome, they are what is best for us, all things considered. This is what we are supposed to think, and the majority accept it. I call this the Wise View because death acceptance has been the dominant view of philosophers since the beginning. Socrates compared our earthly life to an illness and a prison and described death as a healer and a liberator. The Buddha taught that life is suffering and that the way to escape suffering is to end the cycle of birth, death and rebirth. Stoic philosophers from Zeno to Marcus Aurelius believed that everything that happens in accordance with nature is good, and that therefore we should not only accept death but welcome it as an aspect of a perfect totality.
Epicureans agreed with these rival schools and famously argued that death cannot harm us because where we are, death is not, and where death is we are not. We cannot be harmed if we are not, so death is harmless. The simple view that death actually can harm us greatly is one of the least philosophical views one can hold.
In The Case Against Death, philosopher Ingemar Patrick Linden argues that we frown on using science to prolong healthy life only because we're culturally conditioned to think that way.
Many of the stories we tell promote the Wise View. One of the earliest known pieces of literature, the Epic of Gilgamesh, follows Gilgamesh on a quest for eternal life ending with the wisdom that death is the destiny of man. Today we learn about the tedium of immortality from the children’s book Tuck Everlasting by Natalie Babbitt, and we are warned about the vice of wanting to resist death in other books and films such as J.K Rowling’s Harry Potter, where Voldemort must kill Harry as a step towards his own immortality; C.S. Lewis’ The Chronicles of Narnia where the White Witch has gained immortal youth and madness in equal measures; J.R.R. Tolkien’s Lord of the Rings trilogy where the ring extends the wearer’s life but can also destroy them, as exemplified by the creep Gollum; and Doctor Strange where life extension is the one magical power that is taboo. In Star Wars, Yoda, a stereotype of the sage, teaches us the wisdom handed down by philosophers and prophets: “Death is a natural part of life. Rejoice for those around you who transform into the Force. Mourn them do not. Miss them do not.”
We are inundated and saturated with an ideology of death-acceptance. Can the dear reader name one single story where the hero is pursuing anti-aging, longevity or immortality and the villain tries to stop her?
The Wise View resonates with us partly because we think that there is nothing we can do about aging and death, so we do not want to wish for what we cannot have. Youth and immortality are sour grapes to us. Believing that death is, all things considered, not such a bad thing, protects us from experiencing our aging and approaching death as a gruesome tragedy. This need to escape the thought that we are heading towards a personal catastrophe explains why many are so quick to accept arguments against radical life extension, despite their often glaring weaknesses.
One of the most common objections to radical life extension is that aging and death are natural. The problem with this argument is that many things that are natural are very bad, such as cancer, and other things that are not natural are very good, such as a cure for cancer. Why are we so sure that cancer is bad? Because we assume that it is bad to die. Indeed, nothing is more natural than wanting to live. We seem to need philosophers and story tellers to talk us out of it and, in the words of a distinguished bioethicist, “instruct and somewhat moderate our lust for life.”
Another standard objection is that we need a deadline, and that without death we could postpone every action forever. “Death brings urgency and seriousness to life,” say proponents of this view, but there are several problems with this argument. Even if our lives were endless, there would still be many things we would have to do at a certain time, and that could not be redone, for example, saving our planet from being destroyed, or becoming the first person on Venus. And if we prefer pleasant endless lives over unpleasant endless ones, we will have to exercise, eat right, keep our word, develop our talents, show up for time at work, pay our taxes by the due date, remember birthdays, and so on.
The Wise View provides us with a feel-good bromide for the anxiety created by the foreknowledge of our decay and death by telling us that these are not evils, but blessings in disguise. Once perhaps an innocuous delusion, today the view stands in the way of a necessary societal commitment to research that can prolong our healthy life.
Besides, even if we succeeded in ending aging, we would still die from other causes. Given the rate of accidental deaths we would be fortunate to live to age 2000 all things equal. So even if, contrary to what I have argued, we do need a deadline, we can still argue that the natural lifespan that we now labor under is inhuman and that it forces each human to limit her ambitions and to become only a fragment of all that she that could have been. Our tight time constraint imposes tragic choices and inflated opportunity costs. Death does not make life matter; it makes time matter.
The perhaps most awful argument against radical life extension is grounded in a pessimism that holds life in such little regard that it says that best of all is never to have born. This view was expressed by Ecclesiastes in the Hebrew Bible, by Sophocles and several other ancient Greeks, by the German philosopher Arthur Schopenhauer, and recently by, among others, the South African philosopher David Benatar who argues that it is wrong to bring children into the world and that we should euthanize all sentient life. Pessimism, one suspects, largely appeals to some for reasons having to do with personal temperament, but insofar as it is built on factual beliefs, they can be addressed by providing a less negatively biased understanding of the world, by pointing out that curing aging would decrease the badness that they are so hypersensitive to, and by reminding them that if life really becomes unbearable, they are free to quit at any time. Other means of persuasion could include recommending sleep, exercise and taking long brisk walks in nature.
The Wise View provides us with a feel-good bromide for the anxiety created by the foreknowledge of our decay and death by telling us that these are not evils, but blessings in disguise. Once perhaps an innocuous delusion, today the view stands in the way of a necessary societal commitment to research that can prolong our healthy life. We need abandon it and openly admit that aging is a scourge that deserves to be fought with the combined energies equaling those expended on fighting COVID-19, Alzheimer’s disease, cancer, stroke and all the other illnesses for which aging is the greatest risk factor. The fight to end aging transcends ordinary political boundaries and is therefore the kind of grand unifying enterprise that could re-energize a society suffering from divisiveness and the sense of a lack of a common purpose. It is hard to imagine a more worthwhile cause.