Vanguard Estates: The Future of the Aging Brain

November 14, 2022

a grid of six images showing a tire on fire, a person in a bathtub, a person looking at a screen and more

In this series, we’re taking a look at some of the real science, policy, economics, law and ethics that inspired the events of Vanguard Estates. Today: what even is dementia, and why can’t we cure it?

Guests:

Dr. Malú Gámez Tansey — professor of neuroscience and neurology at the University of Florida, and the co-director of the Center for Translational Research in Neurodegenerative Disease
Dr. Tia Powell — psychiatrist and the director of the Center for Bioethics at Albert Einstein College of Medicine, author of the book Dementia Reimagined: Building a Life of Joy and Dignity from Beginning to End.
Charles Piller — investigative reporter at Science magazine
Dr. Tanisha Hill-Jarrett — neuropsychologist and postdoctoral fellow at UCSF
Dr. Margot Kushel — professor of medicine at UCSF and the director of the Center for Vulnerable Populations and the Benioff Homelessness and Housing Initiative
Kate Swaffer: activist & author, co-founder of Dementia Alliance International
Nikki: care partner & founder of A Log Cabin in Brooklyn

Further Reading:

Further resources re: housing

Our episode about guaranteed housing
Housing First, explained
The 12 biggest myths about unhoused people in America
According to Need (99 Percent Invisible podcast)
Find a local mutual aid org near you

The proceeds from ads on this episode will be donated to Moms 4 Housing.

Episode Sponsors:

Purple Carrot: Purple Carrot is THE plant-based subscription meal kit that makes it easy to cook irresistible meals to fuel your body. Each week, choose from an expansive and delicious menu of dinners, lunches, breakfasts, and snacks! Get $30 off your first box by going to www.purplecarrot.com and entering code FLASH at checkout today! Purple Carrot, the easiest way to eat more plants!
Knowable: Learn today’s most in-demand skills with actionable, podcast-style lessons from top experts. Download the Knowable app or visit Knowable.fyi and use the code FLASHFORWARD for an additional 20% off.

Flash Forward is hosted by Rose Eveleth and produced by Ozzy Llinas Goodman. The intro music is by Asura and the outro music is by Hussalonia. The episode art is by Mattie Lubchansky. Amanda McLoughlin and Multitude Productions handle our ad sales. This is a companion episode to the Vanguard Estates series, which you can hear in the Flash Forward feed.

That’s all for this future, come back next time and we’ll travel to a new one.

FULL TRANSCRIPT BELOW

(Transcript provided by Emily White at The Wordary)

▹▹ ▹▹ ▹▹ ▹▹ ▹▹ ▹▹ ▹▹ ▹▹ ▹▹ ▹▹ ▹▹ ▹▹ ▹▹ ▹▹ ▹▹ ▹▹ ▹▹ ▹▹ ▹▹ ▹▹ ▹▹ ▹▹ ▹▹

FLASH FORWARD
“Vanguard Estates: The Future of the Aging Brain”

[Flash Forward intro music – “Whispering Through” by Asura, an electronic, rhythm-heavy piece]

ROSE EVELETH:
Hello and welcome to Flash Forward. I’m Rose, and I’m your host.

Today, we are diving back into the real science behind “Welcome to Vanguard Estates,” the choose-your-own-path story that you can play if you go back into the podcast archives a couple weeks. In our story, the father has dementia, and today’s episode is all about that disease. We’re going to talk: diagnosis, treatment, care, and access to that care.

So let’s start from the beginning, what actually is dementia?

MALU TANSEY:
Dementia is a very complicated set of diseases, and it’s more than one.

ROSE:
That’s Dr. Malu Tansey, a professor of neuroscience and neurology at the University of Florida, and the co-director of the Center for Translational Research in Neurodegenerative Disease.

MALU:
Dementia is basically the loss of cognitive ability, the ability to remember, the ability to make executive decisions. Your behavior changes. And most of it is due to the loss of circuits in the brain and the loss of important brain centers that control that behavior, that decision-making, and your ability to recall memories

ROSE:
The most common form of dementia, the one you have probably heard the most about, is Alzheimer’s. But it’s not the only one.

MALU:
There’s vascular dementia. There’s dementia induced by alcohol dependence, alcohol abuse. There’s something called frontotemporal dementia, which is happening much earlier than the Alzheimer’s dementia that we know about. There’s Lewy body dementia.

ROSE:
And one thing I didn’t really realize until working on this series, is that there is no one easy and obvious test for dementia. It’s not like doctors can do a blood test, or look at your brain, and go “Yep, there it is. That’s dementia.”

MALU:
The field would love to get to a blood test, right, or some kind of test that will definitively tell you yes or no. Like a pregnancy test or a COVID-19 test. That is not yet available to us. But by piecing together a lot of different modalities, the imaging, the blood work, cerebrospinal fluid work, the genetics, the family history, the behavior of the individual, we’re getting a lot better at being able to make more accurate diagnoses.

ROSE:
Part of the reason we don’t have a singular test is that we still don’t know exactly what causes dementia. In fact, in some ways we are not that much better off really than we were over 100 years ago, when Dr. Alois Alzheimer first started cutting open the brains of people with what we now know as Alzheimer’s, to try and figure out what was wrong with them.

Based on his autopsies, Dr. Alzheimer formulated his own theory about what causes the disease that is now named after him. When he looked at his patient’s brains, he noticed that there were these weird plaques. So, kind of like how your teeth can have plaque on them, your brain can also have a buildup of proteins in places that they probably shouldn’t be.

CHARLES PILLIER:
The amyloid hypothesis is the idea that certain proteins, that are called amyloid proteins, accumulate in the brain in different forms, in particular in the form of plaques, these sticky substances that gum up the works in the brain.

ROSE:
This is Charles Piller, an investigative reporter at Science magazine.

CHARLES:
There’s no question that this is the dominant idea about what causes Alzheimer’s. So we’re talking about many billions of dollars spent on this over the last few decades.

ROSE:
In fact, this theory is so dominant in funding that researchers who study other potential causes have often felt pretty left out.

CHARLES:
It’s been called many things, including the amyloid cabal mafia, even the Church of the Holy Amyloid.

ROSE:
And their frustration is probably at least a little bit justified. Because despite spending decades and billions of dollars to target these plaques… nothing has really worked.

TIA POWELL:
There have been now 400 major clinical trials looking at: if you can reduce amyloid plaques, can you improve dementia? And they’ve all failed. There are 400 failed trials and no successes. When is enough, enough?

ROSE:
This is Dr. Tia Powell, a psychiatrist and the director of the Center for Bioethics at Albert Einstein College of Medicine, as well as the author of the book Dementia Reimagined: Building a Life of Joy and Dignity from Beginning to End.

In fact, it is possible that some of the really important papers that showed the importance of amyloid plaques in Alzheimer’s have some issues. Charles recently published an investigation in Science magazine detailing the case of some potentially altered images in some of these papers.

We will get into more detail about the specifics of this case on the bonus podcast this week, but the gist is this: last year, a researcher named Matthew Schrag was asked to take a look at some images produced by a pharmaceutical company called Cassava Sciences. Cassava was working on a new Alzheimer’s drug that targeted amyloid plaques, but a few skeptics thought that something looked off about their images.

CHARLES:
So they reached out to him and said, “Can you take a look at the underlying basic science papers that support this drug? Do they look right to you? Do the figures that they use, the scientific images, look correct? Do they look well-supported?”

ROSE:
When Shrag looked, he found what seemed to maybe be evidence of tampering — images being changed or altered in some way. But it didn’t stop there. Shrag then looked at a bunch of other peer-reviewed papers on this theory, and he kept seeing the same thing.

CHARLES:
Image after image, paper after paper, looked to him to be potentially suspect.

ROSE:
This included a really important, highly cited paper that had been published in Nature, one of the biggest journals in the world. And the paper found very compelling evidence for the amyloid hypothesis.

CHARLES:
So what you had was a kind of breathtaking departure from the malaise that Alzheimer’s research had been in with regard to the amyloid hypothesis for many years, and it was a sensation. It became… out of the tens of thousands of research experiments published in Alzheimer’s disease since 2006, it has been the fifth-most cited in the scientific literature. That’s quite an accomplishment.

ROSE:
And so, Schrag is looking at this super important paper, looking at the images, and going, “Whoof. Oh boy…”

CHARLES:
This, to him, was a bit of a bombshell.

ROSE:
It took Schrag a while to decide what to do with this information; he could have stayed quiet. He could have just put this away and moved on. He did not have hard evidence of misconduct. To prove that someone really did tamper with these images, he would need to see the originals. And going public with these allegations could be risky. Schrag is an assistant professor at Vanderbilt University.

CHARLES:
He’s a very smart guy, up and coming, but he’s no heavyweight in his field.And he faced a lot of vulnerabilities in going public. So he’s challenging important scientists in his field. He’s also challenging funding decisions by NIH, his major funder. He’s challenging the important editors of journals to rethink their decisions, journals on whom he depends.

ROSE:
But eventually, he did decide to take this news public, with the help of Charles, who wrote the story for Science magazine.

The companies and researchers behind these papers all say that there was no misconduct.

CHARLES:
That said, some of the papers that Schrag cited have since been retracted and others are under review by the journals that published them.

ROSE:
Without seeing the original images, we cannot actually know if there was intentional, fraudulent image tampering here. But it still brings us back to this question of research priorities. It’s totally possible that amyloid plaques have something to do with dementia, but they are probably not the only cause. And in fact, even when Dr. Alzheimer published his first papers on plaques, there were people arguing that focusing on them was not the right move.

In particular, one researcher named Dr. Solomon Fuller.

TIA:
So, he was an amazing person by any measure. He was a turn-of-the-20th century, African American research physician who has not gotten anywhere near the attention that he deserves. His grandparents were formerly enslaved people who left the U.S. and went to Liberia. He was born in Liberia. Incredibly smart, incredibly ambitious guy.

ROSE:
That’s Dr. Tia Powell again. Fuller winds up going to Livingstone college, and then Boston University for medical school.

TIA:
And then he’s like… that’s not enough for him that he’s the only… You know, he’s really interested in diseases of the brain.

ROSE:
So he goes to Germany.

TIA:
Ends up getting, basically, a two-year post-doc fellowship in Alzheimer’s lab, learns German, goes to Germany, does the thing, works in that lab. The guy is… that’s amazing.

ROSE:
So when Alzheimer publishes his work, Fuller knows all about it. And he takes a look at it and he’s… unconvinced.

TIA:
He writes a public response and sort of related article that basically says, “Well, good for you. But I don’t think these plaques are either necessary nor sufficient to determine dementia in, and including in what we now call, Alzheimer’s dementia.”

ROSE:
Fuller pointed at patients with dementia who didn’t have plaques, and patients with plaques who didn’t have dementia.

TIA:
And that’s like 1910. 110 years later, many neuroscientists are having this new idea that, “Hey, I don’t think those plaques are necessary or sufficient. What if we had listened to this guy?”

ROSE:
The thing is, the brain is complicated, right? Dementia probably doesn’t have just one, singular cause, even if we really would like for that to be true.

TIA:
I’m a doctor. Science is beautiful. But science is also seductive. It’s very alluring. And there’s an incredibly alluring narrative that says, “Any problem in the body, there should be a switch you can flip a pill, you can take, a thing you can do, a surgery that cuts out some bad thing and it won’t be there anymore, and we’ll just be done with that.” And it’s a ridiculous narrative that applies to almost nothing in medicine.

ROSE:
Today, there is more and more interest in exploring things beyond the amyloid hypothesis.

MALU:
And I think the field has been moving past amyloid for quite some time. There has been good investment in other hypotheses and other approaches.

ROSE:
That’s Dr. Malu Tansey again. Her lab focuses on inflammation and immune function. The brain has a unique relationship with the immune system, including some of its own, specialized immune cells called microglia.

MALU:
One of the things we know is that microglia, which are the brain’s immune resident cells, they’re like the vacuum cleaners. It’s what we call the innate immune system; it’s the most ancient form. The way that we think about it is, you know, having a strong immune response is a good thing to get you to reproductive age.

ROSE:
But today, as you probably know, humans live way past reproductive age.

MALU:
So if you think about the immune system anywhere in the body as sort of the sentinels of when an organ or a cell is in trouble, right, then you should basically start thinking about how is it that these sentinels and caretakers of the more dependent organs or dependent neurons, if you will, how do they change as you’re aging?

ROSE:
Essentially, as we age, it’s possible that our immune system, like, just gets tired.

MALU:
We call it chronic antigenic load. Infections, you know, pollution, pesticides, things you eat, things you smell. All those things contribute to the aging of the immune system.

ROSE:
And as that immune system gets tired, it stops being able to communicate well with the other parts of the system. Your immune cells should be the ones to clean up plaques for instance. Or to prune and trim brain circuits so that they function properly.

MALU:
If you have too much trimming that microglia are eating too many synapses, then you’re going to get synaptic loss and stripping. And that is one of the things we do know happens in dementia. And so, there are signals that the neurons put on their surfaces to call microglia and say, “Eat me.” And there are signals that say, “Don’t eat me.”

And so, in understanding how the immune system ages right along with the rest of the body, you come to recognize that that bidirectional communication has been lost and has been changed in some way, so that you now have some neglect of immune cells in microglia and glial cells of neurons.You have aging of both. And maybe the conversation between those has changed in such a way that no one’s on the same page.

ROSE:
This kind of complex communication doesn’t just include your brain. It also includes your gut.

MALU:
If you take adult animals and you wipe out their gut microbiome with antibiotics, and then you recolonize them with either defined bacteria or with stool fecal matter from, say, Parkinson’s patients or Alzheimer’s patients, that mixture has the capacity to confer some kind of disease, if you will, to the mice that has, like, a genetic predisposition.

ROSE:
Now, given all this complexity, maybe you are starting to understand why we don’t have a treatment for dementia yet. But also, you’ve probably seen headlines about studies that claim to help or even cure Alzheimer’s in mice.

TIA:
If you look at the history, even in the modern era, for decades, people have made claims that we were just on the brink. Another 5 minutes and we’ll have the cure. Knowing your history says, “Well, that’s what they were saying in 1983 and 1993. So shouldn’t I, in 2023, maybe be suspicious if people are still saying we’re 5 minutes from the cure?”

ROSE:
There are a bunch of drugs that are approved for Alzheimer’s. In the story, the dad is on several of them. But none of them really seem to do all that much for people. So what is going on here? Why is it seemingly easy to halt the disease in mice but not in people?

One piece of it has to do with the way we use animal models in this kind of research. It’s not like we’re going out into the mouse population, and finding mice with Alzheimer’s, and recruiting them into studies, right? No, that is not what happens. What happens is that researchers take mice, healthy mice, and then essentially try to give them Alzheimer’s so that they can then test the drug. But remember, we don’t actually know, really, exactly, what causes Alzheimer’s. So we’re giving mice a disease in a way that doesn’t really reflect reality, and then curing that disease. Which, like, yay; but also… not super helpful, right?

There’s also an issue of timing. Researchers know exactly when that mouse “got Alzheimer’s” because they gave it to them.

MALU:
You take a mouse and you say, “I’m going to overexpress the amyloid,” right? You can treat it a week, two weeks, a month after that, and you can cure it because we know when it started.

ROSE:
But in people, that is not the case. In fact, in most people who develop dementia, the actual disease probably started way before they started exhibiting symptoms.

MALU:
So, not knowing when they start is a real problem both for diagnosis and for treatment, because more than likely, we’re going to start too late. We’re going to start once you have that clinical diagnosis, as opposed to other symptoms that we call prodromal, or early stage. For dementia, it would be like the memory forgetters, right? Does that happen in your late 40s, your 50s, or is it that you haven’t slept enough, right? So those are the things that… That’s one thing that makes it difficult. We don’t know when they start.

ROSE:
It’s possible that we might never be able to design and develop one single drug, or treatment, for dementia.

TIA:
And I would love for there to be effective medications. I think that would be wonderful, but I don’t think that that’s a realistic possibility.

ROSE:
Tia argues that the fixation on pharmaceutical treatments actually does a disservice to the people living with dementia today.

TIA:
Not even the proposed medications are aimed at people who already have significant dementia. There’s no benefit for that group. They’re not even eligible, really, for something like Aducanumab. So, it means we need to think about… We have 6.5 million people today who already have just Alzheimer’s dementia. What are we doing for them? How can we help them? None of this curative or slowing down medication… It’s not relevant for them. So what are the things that we can do?

ROSE:
Instead of spending so much of our time and money hunting for a drug that can cure dementia, maybe we should be spending our time thinking about how to help people who are living with the disease today.

Remember Kate Swaffer from last episode? She was diagnosed and basically told, “Welp, sucks for you. Go home and get ready to die,” basically. And Tia says that is not uncommon.

TIA:
A colleague called me a couple of years ago, and his sister, who was a very effective executive, was unfortunately diagnosed with early-onset dementia. And at this towering Mecca of medicine, basically, the doctor said, as you describe, “Oh, man, that’s… you know, sucks to be you. And I can’t do anything for you. If you want a role in research, we have some trials and you could do that if you want to. And anyway, you can come back in six months and I’ll see how much worse you are.”

And she just, like… As she left, she thought, “Should I… I’m still working. Is that right for me to do? Should I not do that? Are there implications in terms of disability and insurance? Should I keep trying? Do they have to accommodate me or no, they don’t? What about housing? Should I stay where I am? Should I stay in my separate house in the suburbs, or is that going to be disastrous? Do I need to, like, right away? Well, I can manage it, you know, pick something with more support.”

ROSE:
None of these questions were addressed at this meeting with her doctor. And often, Tia says that this is in part because neurologists simply aren’t trained to know to ask, let alone help answer those questions.

TIA:
Like, if you have 15 minutes and you have to make the diagnosis of dementia, I’m not sure that you’re the best person to say “Think about your bank accounts. You don’t want to be susceptible to a scammer who’s going to call you ten years from now and take all your hard-earned savings and run off with them.”

ROSE:
But someone should take on these problems with the patient. And Tia points to a handful of places that are actually starting to try to do that.

TIA:
I know NYU has this program where you go in, you get the diagnosis. On that day, they say to you, “Our team would like permission to contact you next week.”

ROSE:
When they call, they connect people with a team of social workers, advocates, people who can come, and help, talk through what happens next. And data shows that these programs help reduce hospital admissions and ER visits.

TIA:
You don’t need a Nobel Prize-winning discovery of how dementia works to implement better coordination of care, which means your life is better. Not being in the hospital? That’s a huge win. I’ve spent my whole life working in hospitals; therefore I can tell you with certainty, you don’t want to go there.

ROSE:
Instead of pushing for a pharmaceutical cure, what if we invested money into, I don’t know, actual caregivers — professionals who can be paid well to spend time with folks, housing that actually accommodates people, support systems to make sure people have what they need to live well?

TIA:
We like to focus on quantity, but actually, dementia is a fatal illness. So, these are people who are going to die. I hate to mention this, but we’re actually all going to die. Preventing death is neither feasible nor necessarily helpful as our main focus. I’m not saying don’t provide care. I’m saying, for what time this person has left, how can we make every day better? Which is the mantra of palliative care. For every day you have left, what can we do to make this day a better day?

ROSE:
There is a ton of data showing that what people want for their own end-of-life care. And it often shows that it’s really different from what they get. And that isn’t necessarily because anybody in their life is out to get them or did anything wrong. It’s often because the choices that we are offered are not the ones that we want.

And when we come back, we’re going to talk about what happens when your choices are even further constrained by your circumstances.

MARGOT KUSHEL:
It is a much bigger problem than people recognize. And when they’re walking down the street and seeing people experiencing homelessness, some of the behaviors that they see might in fact be due to cognitive aging or dementia.

But first, a quick break.

ADVERTISEMENT: PURPLE CARROT

I am a terrible cook. I only recently figured out how to make rice without, like, ruining it somehow. If there is a “meanwhile” in a recipe, I don’t even bother. But I do like food, and in particular I like vegetarian food. So if you are like me and you might need a little bit of help with some simple recipes and maybe some pre-portioned ingredients, check out Purple Carrot.

Purple Carrot is the plant-based subscription meal kit that makes it easy to cook irresistible meals to fuel your body. Each week, choose from an expansive and delicious menu of dinners, lunches, breakfasts, and snacks. You can sign up for a plan, like high protein, or gluten-free, or quick and easy, or you can customize your order every week. They also have breakfasts, lunches, and snacks.

Every box is an opportunity to learn and experience something new with easy recipes and fresh, pre-portioned ingredients. No shopping, no food waste, just restaurant-quality, plant-based meals. And you can get $30 off your first box by going to PurpleCarrot.com and entering the code Flash (like Flash Forward) at checkout today.

Purple Carrot, the easiest way to eat more plants.

ADVERTISEMENT END

ADVERTISEMENT: KNOWABLE

What do NBA All-Star Chris Paul, NASA commander Scott Kelly, and Reddit co-founder Alexis Ohanian have in common, aside from being… rich dudes? The other thing they have in common is that they have all created audio courses to teach you everything from leadership, to plant-based eating, to launching startups, on Knowable.

Knowable is a new app where the world’s top experts teach new skills in bite-sized audio courses. They are short like a podcast, expert-led like an audiobook, and 100% ad-free. Knowable is accessible on your phone and on the web, and each audio course is broken out into individual lessons, usually around 15 minutes long. You can explore at your own pace, and each class is supported by downloadable materials, lessons, recipes, and more.

As a Flash Forward listener, you get an annual membership for 20% off. Get unlimited access to every Knowable audio course right now. Just download the Knowable app or visit Knowable.fyi and use the code ‘flashforward’ for an additional 20% off.

ADVERTISEMENT END

ROSE:
So, one thing we don’t discuss much in our story but that is very real in the real world, is how dementia diagnosis and care can change depending on social and cultural elements.

MALU:
We know that the risk that people have that comes with their genetics can be very different in people of different ethnicity.

ROSE:
That’s Dr. Malu Tansey again.

MALU:
So we don’t know enough about how the genetics of some of these mutations affect different populations. That’s number one. The second thing is that the way that different ethnicities, ethnic groups, respond to therapy — pharmacogenomics — can be very different.

ROSE:
Then there are the non-genetic differences. In the United States, for example, people of color are less likely to have access to healthy food, safe places to walk and exercise, and even just safe places to live. Stress can have a big impact on health, and dementia is no exception.

MALU:
So, stress is a very interesting trigger or risk factor, if you will, because it increases inflammation. It dysregulates your behavior. And chronic stress is bad in terms of, you know, you can’t sleep very well. And we know that during sleep, that’s when you remove all those toxic proteins from your brain. And so it is kind of a snowball.

ROSE:
We have talked about environmental racism on the show before, and it rears its head here too.

MALU:
There was an interesting study done in Mexico City to look at whether any of the neurodegeneration and plaque building, a buildup, started in your brain or did it start through the nose? Like, is that something you inhaled?

And it turns out that what happened is, in the outskirts, you had a lot of open landfills. And one of the things that you see around open landfills is lipopolysaccharide, or endotoxin, that’s covering all the bacteria that’s in the air. And it turns out that people that lived out there had more deposits of these amyloid-like proteins.

ROSE:
These kinds of environmental conditions happen all over the world. In the United States, for example, communities of color are more likely to live in areas with higher rates of air pollution, landfills, toxic waste facilities, all of which have been connected with cognitive decline.

And I want to take a quick detour into another environment that is really bad for people’s health, which is prison. Right now, over 10% of incarcerated people in the United States are over the age of 55. In the last few decades, the number of older prisoners has increased by a huge amount. Between 1999 and 2016, the population of folks in prison who were 55 or older increased 280%. In the next decade, the ACLU projects that older prisoners will make up a third of the prison population.

And prisons are not at all prepared for what that means. We’re going to talk about this more on the bonus podcast, but one study estimates that up to half of the estimated 400,000 incarcerated elderly in 2030 will develop dementia. And as we’ve talked about on this show, prison is a place that can accelerate and even cause disability and injury. And that includes cognitive decline and dementia.

We also know that in the United States, incarcerated folks are more likely to be people of color, due to over-policing and racist policies. And even outside of prisons, Black Americans have a much higher rate of Alzheimer’s than white Americans.

TANISHA G. HILL-JARRETT:
They are 1.5 to 2 times more likely to be diagnosed with Alzheimer’s disease; Alzheimer’s disease and related dementias.

ROSE:
This is Dr. Tanisha Hill-Jarrett, a neuropsychologist and postdoctoral fellow at UCSF.

TANISHA:
And we also know that Black Americans are disproportionately diagnosed with what’s called mixed dementia. And so, that means that they have different underlying etiologies, sometimes vascular causes, sometimes Lewy bodies, in addition to Alzheimer’s disease pathology. So they’ll have multiple underlying causes that contribute to the dementia.

ROSE:
Research also shows that Black Americans tend to get diagnosed later than white Americans. And the later you diagnose something like dementia, the harder it can be to manage.

Now, it’s hard to tease apart the causes of these disparities.

TANISHA:
It could be the neighborhood a person’s in. It could be access to food and nutritious foods. It could be their work environment; it could be their educational experience. It could be just the psychosocial stressors and things like racism and gendered racism, things that I’m interested in looking at.

ROSE:
But Tanisha is less interested in pinpointing exactly which elements impact dementia and more interested in the ways that doctors and families can better care for folks.

TANISHA:
Right now I’m looking at coping and we’re looking at coping as a mediator.

ROSE:
One of the questions she’s been looking into is: does someone’s ability to cope with the stresses of racism and oppression make them more resilient to dementia? And if so, can we teach people healthy coping mechanisms that might help?

TANISHA:
I want to throw out a disclaimer in that I am not in any way suggesting that the people that are experiencing oppression should figure out how to deal with it, or better adapt, or contort themselves in certain ways. It’s really the systems that need to change. But I feel like we’re so far from that, you know, in society, that this is the best thing we have now for Black women and other marginalized communities to be able to pursue wellness.

ROSE:
Tanisha has looked at a couple kinds of coping mechanisms that people tend to employ. And not all of them are good.

TANISHA:
And what we found actually is that, in older Black women who have experienced higher rates of gendered racism across their lifetime… So, we looked across the entire course of their life. They are more likely to engage in what’s called disengagement coping, or more likely to utilize disengagement coping. And so that is something that’s, like, denying that a problem exists, resorting to substance use, so like alcohol or drugs, and kind of trying to set the problem to the side.

ROSE:
Obviously, this is not great, and so Tanisha is looking at whether she can help people find other ways to handle the constant grind of living in a society that routinely denies you opportunities and care.

TANISHA:
Spirituality, that’s been crucial for the Black American community. Problem solving is one. And then of course, social support. So talking to friends, loved ones, or having kind of a community that you can rely on as well.

It’s really going to the communities at large and educating, providing education, partnering with them, listening to them. They have the answers. Like, they know themselves best, right? And so having those conversations is really, really critical and involving the community at every level of the work that you’re doing, I think, is essential.

I’m also interested in factors that promote resilience, right? So I don’t want to be this only deficits-based researcher, right? I do want to approach my work from a strengths-based lens and identify things that can promote resilience and hope in the Black community. And I think that’s kind of where some of the work with Black women in the community that I’m trying to move towards, is identifying ways that they can be celebrated, feel celebrated, and live a long, healthy life overall.

ROSE:
So, Tanisha’s work is largely on Black Americans, but there is another group, which of course has some overlap here, but who I think is even more commonly left out of conversations about aging and dementia.

DR. MARGOT KUSHEL:
I often say to people that there is no medicine as powerful as housing.

ROSE:
This is Dr. Margot Kushel, a professor of medicine at UCSF and the Director of the Center for Vulnerable Populations and the Benioff Homelessness and Housing Initiative.

MARGOT:
And I am a practicing general internist, but I spend most of my time doing research and policy translation work around homelessness. So, I particularly work on… Older homeless adults is my particular passion.

ROSE:
And the number of people without housing who are over 50 has grown a huge amount in the last few decades.

MARGOT:
In 1990, only 11% were 50 or older. And by 2003, 37%.

ROSE:
Today, that number is more like half. Half of the people currently living in the United States without homes are 50 or older. And it isn’t just that the people who are unhoused are getting older. A lot of these people are newly homeless after 50. Margot has been working with a cohort of older unhoused folks in Oakland for over ten years.

MARGOT:
Almost half had never been homeless in their life before they turned 50.

ROSE:
And this population, these folks who are suddenly without a house for the first time after 50, they often have a different life history than those who find themselves without housing at younger ages.

MARGOT:
They were really working poor folks. They had worked their entire lives, often more than one job. They were almost entirely in non-unionized but physically demanding jobs. I mean, people in unions who have better pensions don’t… It’s a huge protection against winding up homeless. So these were folks who were working as laborers, they were working as drivers, they were working in things that were tough to do, low paid, and didn’t have pension protections or other protections.

And sometime after the age of 50, something went wrong, or sometimes two things. And it was sort of something like they got sick and lost their job. Their spouse or partner got sick and lost their job. Their marriage fell apart. Their spouse or partner died or their parents died. Lots of people living in mom’s house, and mom was 78 and passed, and their name wasn’t on the lease or the mortgage, or the family had taken out a reverse mortgage, or the house got taken away because mom went into a nursing home and Medicaid was clawing back their assets. I mean, all sorts of horrible things. And they wound up being homeless for the first time after 50, not having ever experienced it before. They generally had much less substance use, much less mental health problems. They really were seeing the effects of poverty and racism. Overwhelmingly, Black folks were in this position.

ROSE:
And what these folks need is actually a bit different from what other groups of unhoused folks might need.

MARGOT:
These were folks who were fully functioning in every way, right? They were getting up in the morning. They’re going to work. They’re going to church on Sunday. They were, like, totally core members of our… Did not need a million case managers, and social workers, and psychiatric support. Like, really what they needed was a home that they could afford.

ROSE:
Now, I want to be clear about something. The point is not that these people are the ‘good homeless’ who deserve help and the other folks are the ‘bad homeless’ who got themselves into this situation… etc., etc. Both groups deserve support. But it is worth identifying the different needs.

In a lot of cases, these older folks could have been spared the trauma of losing their housing if they had access to a really relatively small amount of money.

MARGOT:
We’re doing a big study now that will release the results in the next few months. We’re just finishing up across the whole state of California, and we’ve given people, of any age, thought experiments of, like, what if you had gotten $5,000 to $10,000 one time, you know, right when you’re about to lose your housing, and overwhelmingly people say, “Yeah, that would have done it.”

ROSE:
That kind of money is nothing compared to the cost of homelessness, both to the person and to public institutions.

MARGOT:
We will pay $100 or $200 a night for a really terrible homeless shelter that causes a lot of harm, and trauma, and difficulty. But we would never think of giving someone’s kid, you know, $500 a month to offset the costs of having dad move in with them, right? And so I think we need to rethink that.

Once people are homeless, everything else in their life falls apart. They’re very high risk of death. The suffering is just enormous, and frankly, it’s just more expensive to end than it is to start to not have it happen in the first place.

ROSE:
The statistics on survival rates for folks who are unhoused are… incredibly bleak.

MARGOT:
We just actually published a paper that was really discouraging, which showed that incredibly high death rates among these folks, incredibly high among everyone, 50 and older and homeless; but highest most among those first-homeless-after-50. They were almost twice as likely to die in the study follow-up period as those who are first homeless before 50.

ROSE:
And we haven’t even gotten to dementia yet. It turns out that folks who lose their housing for the first time after 50 have a very high chance of dealing with some kind of cognitive issue. Margot sees it in her Oakland study:

MARGOT:
We found over a third of our participants had marked deterioration in executive function.

ROSE:
They even did a follow-up with some neurologists.

MARGOT:
… who randomly chose about 30 people who had been first homeless after 50. And they literally just said, like… whoever came next, they chose. So, you know, of our study sample. And they found nobody who was calculating normal. Not one person.

I think it is a much bigger problem than people recognize. And when they’re walking down the street and seeing people experiencing homelessness, some of the behaviors that they see might in fact be due to cognitive aging or dementias. I also think that it leaves people just incredibly vulnerable.

ROSE:
It is already VERY hard to figure out how to get services when you are unhoused.

I mean, I personally have tried to help a friend go through the process to get some support, and I could not figure it out. And I have a master’s degree, English is my first language, I have free time to use on this, I have every possible advantage here, and still… it just felt impossible. Margot has had the same experience.

MARGOT:
I once took an acquaintance or a friend through the county welfare system. I was trying to advocate for her to get her signed up for some benefits. And to be honest, and this is sort of my life’s work, and I’m pretty well educated, and I have pretty good executive function, I literally could not figure it out. Like, thankfully the really lovely people in line kept moving me. Like the clients were telling me what to do because I could not figure it out. Our systems are so not user-friendly.

ROSE:
How, then, are we possibly expecting folks with dementia to figure this out?

MARGOT:
You know, it’s really undoable if you have these cognitive issues and we make such high demands on folks. And to try to think about trying to, you know, locate an apartment when you have no telephone, you have no internet, you have no clean clothes, and you’ve got cognitive impairment. Like it’s actually somewhat absurd. And so I think this is a hugely important and under-recognized problem.

ROSE:
And this problem isn’t going away.

MARGOT:
My colleague, Dennis Culhane, has done further research on projecting the population, and he anticipates, for instance, that the 65 and up will triple between 2017 and 2030. So, I think we’re just beginning to see this, and I think we’re wholly unprepared.

ROSE:
Remember, in the United States, social security doesn’t kick in until 62 or older. A lot of these folks? They’re literally not going to make it that long.

MARGOT:
And I think we have a system that’s profoundly unfair. Like people put their money into Social Security their whole lives. But if you’ve been subjected to racism, if you’re dealing with housing insecurity, if you’ve had a really physically demanding job, you don’t live long enough to collect that. If you die, like most homeless people do in their 40s, 50s, early 60s. You literally die. The rest of society gets to keep all the money that you put aside for yourself. So, I think we need to really rethink our systems of care, our safety net. We need to rethink the fact that we have left… We’ve just left poor, particularly people of color, low-income others out without a net, and they are falling, and they are dying, and they’re terrified, and they deserve a lot better than they’re getting.

ROSE:
We’ve talked on the show about solutions to some of these problems — including guaranteed housing programs. And this is an issue that I feel personally very strongly about because it is just absolutely awful the way that we treat folks who are already suffering like this.

If you want to learn more about housing and homelessness, I will put a few links in the show notes. I am also donating the ad proceeds from this episode to Moms 4 Housing, which is a collective of homeless and marginally housed mothers in Oakland, here where I am.

And I wanted to talk about these various barriers to care here in the end of the episode, even though it’s not in the “Welcome to Vanguard Estates” series, because often, when you read blog posts about dementia, or watch talks, or whatever it is, people will say something like “dementia doesn’t care who you are.” The idea is that these kinds of brain diseases can impact anybody. Dementia is, in theory, an equal-opportunity disease. And that is, sort of, true. But the impact that it has, and someone’s ability to handle that impact, is very much not equal. And it’s important to recognize that if we want to live in a future where everybody gets access to care, and a life that ends with grace, and joy, and support.

And I think, I hope, that we all do want to live in that future, so it’s important to name the things that are getting in the way of that.

[Flash Forward closing music begins – a snapping, synthy piece]

Flash Forward is hosted by me, Rose Eveleth, and produced by Ozzy Llinas Goodman. The intro music is by Asura and the outro music is by Hussalonia. The episode art is by Mattie Lubchansky.

This is the second episode in our series that explains the science, tech, economics, and policy, etc., behind the “Welcome to Vanguard Estates” series. Next week, we are going to talk all about the technology that exists for seniors, and what might happen in the future with robotic aids, and apps, and cameras, and all of that interesting, thorny stuff.

Come back next week and we’ll talk about that.