Issue 85

Disrupting dementia

Dec. 5, 2019

Hello friend! Welcome to Scrap Facts.

I'm a reporter covering health and science with insatiable curiosity. I love everything I learn, not all of which gets its own story. Each week, I'll bring you some of my favorite facts that I picked up on the job or while out living life.

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Disrupting dementia

As promised, friend, I’ve published a full series on the costs of dementia, and the solutions scientists and policymakers are devising to lower them. Tackling dementia from all angles—finding it sooner, coming up with treatments that actually , and changing the way we treat people living with dementia and their families—can all help.

You can read in full here.

If you’d like to learn more about dementia, my editor Katie Palmer and I are going to be on a conference call tomorrow, Dec. 6, at 11 am US eastern time. You can access it here. You can reply to this email with questions, or ask them in the call tomorrow. Hope to see you there! (It’ll be recorded, too.)

You’ll need a Quartz membership to read these stories. For half off, sign up using the promo codes “COGNITION” or KFOLEY3089.”

The cognition test Trump bragged about acing is only catches a handful of cognitive problems.

Found while reporting: If dementia can’t be prevented, can it at least be detected early?

One of the major issues with dementia is that there’s no good way to detect it before a person actually has cognitive symptoms.

Practically, this means people learn they have dementia once it has substantially progressed, and couldn’t be treated even if there were an effective drug to slow its progression. (There’s one on the horizon! But it won’t be a fix for everyone.) Noticeable cognitive trouble is the result of brain deterioration after years of damage has already been done, and it doesn’t seem like that damage can be reversed.

The way that health care providers can do a quick assessment on someone’s cognitive are through a couple of 10 to 15 minute tests. The most common are tests called the mini-mental state evaluation (MMSE) and the Montreal Cognitive Assessment (MoCA). Both tests are scored out of 30; generally a score of 27-26 or below indicate a person is experiencing some issues. They haven’t been updated in roughly 20 years.

These tests are great at picking out people who have definitely experienced major cognitive decline who need to see a specialist. For healthy adults, they can’t tell you much. One of the most famous MoCA test questions involves identifying pictures of animals—which you’d expect even a child to be able to ace.

Last year, President Trump had a doctor give him a MoCA exam, just to prove that he is a “very stable genius,” as he calls himself. He scored a 30/30, which his supporters argued was evidence that any concerns about his cognition and ability to lead the country were off-base.

This isn’t exactly true. Scoring a 30/30 just means he doesn’t have noticeable cognitive decline. There could be more subtle changes it can’t pick up. And, as Vox pointed out, the test says nothing about personality changes or judgment—both of which researchers have identified as potential markers of cognitive decline.

The founder of hospice was a scientist ahead of her time.

Found while reporting: Next-generation dementia care could learn a lesson from cancer care.

If I could have lunch with anyone on the planet, one of my top choices would be Cicely Saunders, the founder of hospice care.

Hospice care is a form of palliative care. Hospice is for the last 6 months of someone’s life, when they’ve elected to forego life-extending treatments and focus on comfort instead. Palliative care in general focuses on a person’s goals and comfort throughout the course of any chronic condition, and can be changed over time to meet a person’s goals.

Saunders served as a nurse in World War II and then worked as a social worker for people with terminal cancer. She saw that, at the time, doctors essentially ignored a lot of people who were almost certainly going to die, despite the fact that they were in tremendous amounts of pain. This suffering was put into stark context when Saunders met—and likely fell in love with—a man named David Tasma. Tasma was one of the people she cared for her who dying at the age of 40. He allegedly told her "I’ll be a window in your home,” and left her a sum of money to help her start to find a home to care for people who were dying.

Eventually, she brought this up to a friend—a male orthopedic surgeon—who told her that she was right, but that no one would take her seriously as a nurse; she’d need to become a doctor.

At 33, she enrolled in med school. Then, she got to work: she knew that she’d need large institutional support to get her idea of alleviating suffering off the ground. So, she created an experiment and obtained testimonies from 1,100 people dying of cancer in her care at St. Joseph’s, one of the first hospice’s run by nuns. Almost every one reflected that their quality of life was better with constant pain management.

These results were the start of relationships with giants in the field like the National Health Service and the American Cancer Society—which made a hospice, and palliative care in general, an option for first terminally ill people with cancer, but now more broadly anyone who needs it.

Saunders passed away from breast cancer in 2005; her obituary in the BMJ is full of other fascinating details about her life. She was clearly an astute, compassionate person who was so smart about conducting research before it was remotely mainstream to be a woman in science.

Dementia care is filled with tiny tragedies every day that science can’t account for.

Found while reporting: Science can’t fix dementia’s most heartbreaking problem.

This is technically not a scrap fact, but more of a realization.

As a science reporter, I talk to researchers all the time who see a clear path for the solution they’re working toward. They have a set number of experiments they plan to run, which will confirm or rule out hypotheses along the way, and then they can find the answers the want. It’s a long journey, but there’s a plan.

I thought there’d be some kind of answer about what the ideal dementia care and planning would look like, so I asked some of the leading experts in the field. When they couldn’t give me concrete answers, I turned to people in my life who have gone through it themselves.

What I learned is that those answers don’t exist and never will. Each case of dementia is as unique as the person it affects, and no matter what, it’s full of the big tragedies. We often hear about the big ones, like accidents or scary trips to the hospital, or out-of-control bills.

But there are smaller ones that get less attention: My parents, for example, got my grandfather a small dog to keep him company when he was in the early stages of Alzheimer’s disease. Grandpa John loved Smokey, but he had a hard time remembering that he had to hold onto the leash; one day, Smokey was hit by a car. This was one of many tiny tragedies that add to the cumulative weight of a dementia diagnosis along the way.

I’m really grateful that my friend Tom, my parents, and a man named Jay Reinstein talked to me for what ultimately turned into the reported essay above. It’s clear that there will never be a perfect care, even with the best resources available. Caregivers just have to do the best they can, one day at a time.

Animal of the issue: Baby Yoda

That last section was so somber, I wanted to leave you with something uplifting.

True, baby Yoda is not a creature that lives on Earth, but the internet (myself included) has LOST ITS MIND over how cute they are. (Friend of the newsletter Victoria Edel pointed out that we have no idea how gender works for non-human creatures like baby Yoda. Until we learn more, baby Yoda gets singular “they.”) If you have somehow missed this cultural phenomenon, now’s your chance to take in the star of the new Disney+ show, Baby Yoda—er, The Mandalorian, I mean.

Here’s serious food for thought, though: Our perception of Earth animals can affect our efforts to save them. Real cute and charismatic animals, like pandas and otters, get more conservation funding than less aesthetically appealing creatures, like vultures. Additionally, people may also perceive that iconic animals that seem to be everywhere in the wild, even when they aren’t. The future of actual animal conservation comes from educating ourselves about which animals need our help the most, regardless of their looks.

Stuff I learned from others:

Honestly, you’re probably not gonna get much done in December anyway. Santa takes your data privacy very seriously. That Crispr-baby news was based on pretty crappy that never got published. TikTok basically tried to penalize people who were bullied by down-regulating their videos on the app. The League thinks the future of dating is all virtual, and nothing can go wrong with random video speed dates. Carbon dioxide kills most animals who venture into a remote valley of Russia. A vape gave one person a lung condition common in metal workers.

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Top image by E. Y. Smith, headshot drawing by Richard Howard.

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