- The Alzheimer's Association estimates that about 6.5 million Americans aged 65 and older are living with Alzheimer's dementia.

Today's guest chronicles the impact this disease had on one family, his own.

He's Dr. Sandeep Jauhar, this week on "Story in the Public Square."

(inspiring music) (inspiring music continues) Hello and welcome to "Story in the Public Square" where storytelling meets public affairs.

I'm Jim Ludes from the Pell Center at Salve Regina University.

- And I'm G. Wayne Miller, also at Salve's Pell Center.

- This week, we're joined by Dr. Sandeep Jauhar, a practicing cardiologist.

He's also the author of three books, most recently a searing and personal account titled "My Father's Brain: Life in the Shadow of Alzheimer's."

Sandeep, thank you so much for coming back to the show.

- Thanks for having me.

- You know, I mentioned your other books.

There's "A Doctor's Initiation," and "Doctored: the Disillusionment of an American Physician," and these were all tremendous works.

This one is much more personal.

Can you tell us what inspired you to write this book, "My Father's Brain"?

- Well, it was my experience, my family's experience of my father's dissent into dementia.

And, you know, it was one of the most difficult journeys I've ever been in, been through, and, you know, when people go through something like that, they tend to want to put it away somewhere, you know, not think about it or talk about it again.

And, you know, I just, I wanted to write about the experience, the pain of it and what I learned from it, what I learned about caregiving, what I learned about the brain, to help people really, frankly, on their own journeys with family members who are suffering from dementia or Alzheimer's, which is, you know, as you know, just a huge problem in this country and across the world.

- Well, and we're gonna get into the book and into that journey a little bit more, but let's maybe take a step back and talk about your mom and your dad and your family and how they came to the United States.

Could you just give us that sort of background to your family?

- Sure.

You know, I was born in India.

We moved around a lot because my father was a fairly eminent plant geneticist.

You know, I would say he was pretty renowned in his field.

He published in, you know, the top journalism in the world, and, you know, which made his experience of his disease just that much more difficult.

But, you know, we lived in India for a short while.

We moved to the UK because my father was, got a very storied scientific position in the UK where he published in, you know journals like Nature, you know, really top places.

But, you know, my father always wanted to serve what was called the Green Revolution, which was, you know, sort of attempt, and, you know, way in which scientists, plant geneticists, plant breeders would work using genetic techniques to improve the yield of crop plants.

And my father grew up very poor, and it was one of his great wishes to work on improving food production for India's poor.

So even though he was doing very well in the UK, we went back to India.

But right around that time, there was a lot of political upheaval, and we had to leave the country.

And we moved to the United States in January of 1977.

And that's really where, you know, I think of growing up, you know, 'cause I was still, I think I had just turned eight years old.

I literally lived most of my life in the US.

And, you know, my father did fantastic work in the US, and he rose to professorship.

He became a fellow of the American Association for the Advancement of Science.

But around, you know, 2012 maybe, you know, he started telling us that he was having a harder time getting his work done.

And, you know, like a lot of family members, you know, we were, his children were living far away, and we really didn't understand the extent of his problem.

And my mother tended to minimize it.

So we finally sort of understood that he was declining.

But the larger issue for my family was that my mother had developed Parkinson's disease.

And so we encouraged my father and mother to move to Long Island close to my brother and me so that we could sort of keep an eye on them.

And it really was because of my mother's illness.

But by the time my parents moved to Long Island, which was in summer of 2014, it was pretty clear that my father was also on the decline, and they needed to move for him as well.

- So, Sandeep, you have agreed to read a passage from the book.

Thank you for doing that.

And it's the beginning of chapter two.

So "When will you bring Pia?"

And this will give us, give our audience and everyone a real flavor of the quality of the writing, of the situation you were dealing with.

And so go ahead, give us that read please.

- Sure.

So my parents moved in the summer of 2014, and this was, it was very clear soon after they moved that my father was on the decline.

And we took him to a neurologist.

And the neurologist diagnosed him with mild cognitive impairment, but sort of a precursor to Alzheimer's and put him on some medication, which wasn't really working very well.

It was intended to bolster his memory.

So this passage is about his memory problems, and it's really sort of characteristic of the memory problems that a lot of patients with Alzheimer's suffer, which is basically the inability to form short-term memories: One day during my parents' first winter on Long Island a few weeks after the visit to Dr. Gordon, my father and I went for a walk.

The sun was shining brightly that day, fluorescing off the white drifts to either side of us.

The snow had come early that year.

It was now melting into a kind of grayish honeycomb along the footpath.

Cars in driveways were blanketed in frost.

Pellets of road salt crackled under our shoes.

"You tripped here, remember?"

I said, pointing to where the sidewalk was jutting up.

My father nodded.

He remained a handsome man with his meticulously trimmed salt and pepper mustache appearing 20 years younger than his age.

That afternoon, he was wearing a red sweater under his bomber jacket.

A green cap with earmuffs covered his head.

"I was running," he recalled of the brief stumble that fortunately had not resulted in injury.

He had actually been walking.

"It was dark."

"You must not go out when it's dark," I admonished.

"I've told you before.

"I should go with Pia," he said, laughing.

"When will you bring her?"

"I brought her last weekend."

"No," he cried.

"I did."

"Well, you should bring her more often.

She's a lovely child."

I told him I would.

I didn't have the heart to tell him that his beloved granddaughter rarely wanted to visit anymore.

He stopped to blow his nose with his fingers leaving a string of snot on the wet snow.

"Come on, let's go back," he said.

We had walked about a block.

"You don't want to walk some more?"

"No, I'm tired," he said, turning around.

Then, as if on cue, the tape rewound.

"So, when will you bring Pia?"

- Wow.

Powerful and unflinching and just remarkable.

As his Alzheimer's progressed, his memory, as you're right about, began to go.

And yet he continued to make excuses.

And he did in this passage here about what was happening as if it weren't happening.

Is that characteristic of the disease, certainly at at those stage that people, and they know themselves that memory is slipping away, and yet they come up with excuses, make excuses trying to hide it or whatever.

Anyway, is that characteristic of the disease?

- It very much is.

And, you know, one of the things that I wanted to do is learn about the brain and what aspects of the brain get diseased in Alzheimer's and when, like at which stage.

Because what was really most frustrating for me as a caregiver and really as a doctor, a doctor who really didn't know that much about dementia before this whole journey began, is that when my father would act in ways that just didn't make sense, were irrational, that's when I felt the most frustrated.

And so as I learned more about the brain, it sort of gave me some understanding and, frankly, some patients as a caregiver.

So what I learned is that Alzheimer's very often will first affect the hippocampus which is the part of the brain that's involved in the processing of short-term experiences.

And it, the hippocampus is integral to taking short-term experiences and turning them into long-term memories.

So when the hippocampus gets diseased in Alzheimer's, people will forget what they had for lunch.

They'll forget what they just did because the short-term memory doesn't go into long-term storage.

What happens with Alzheimer's as the disease progresses is that the disease moves away from the hippocampus, which is sort of along the sides of the brain, and into the this more central part of the brain, which is the frontal and parietal lobes.

And those are the structures responsible for self-awareness, a sense of like what's going on with you.

And when that became affected, my father wasn't aware of his disease.

It's one of those strange things with the brain where the disease affects your perception or understanding of the disease.

And so it's called anosognosia.

And it's a phenomenon that a lot of patients with dementia will suffer from.

So, you know, early on, you know, when he moved to Long Island, he would make quips like, "Yeah, my memory's not the way it used to be," but as his disease progressed, he started to be in full blown denial that he even had a problem.

And that was really indicative of the movement of the disease from the hippocampus into other areas of the brain.

- Sandeep, you really write with tremendous candor.

I wonder if you could share with our audience who maybe haven't read the book yet, what was the impact of both your father's illness and your mother's illness on your family as a whole?

- Yeah.

I mean, it was tremendously difficult because, you know, physically they were both sort of okay.

You know, my father had pretty good, you know, exercise capacity, you know, his heart was good.

You know, he really didn't have any other diseases.

But my parents both became afflicted with brain disease.

My mother with Parkinson's, my father with Alzheimer's, but their diseases were different.

They affected the brain.

But my mother's disease was really more of a motor problem, you know, where she couldn't sort of dress herself, or, you know didn't really know how to, you know, sort of do, you know, simple motor activities.

But she was all there, you know, mentally.

Like she could remember that, you know, what she had for breakfast, you know, but she couldn't maybe dress yourself.

Whereas Alzheimer's, which affected my father, was really more of a mental disease, but it didn't affect his motor function so much.

So he could walk, he could sort of, you know, easily, you know, eat, feed himself, dress, you know, until the very, very late stages.

But mentally he didn't know, like, for example, what he had for breakfast.

So their diseases were complementary in some ways.

They affected the brain, but they affected different parts of the brain.

And, you know, regardless, it was incredibly challenging.

Really, I mean, it was the most difficult journey with my father, especially, that I've ever taken.

And I realized that, you know, I'm not alone.

You know, there's so many people with Alzheimer's and dementia in this country and so many caregivers who are just family members who are like people like I was in some ways.

I mean, of course, I had medical background and so on, but there was a lot that I didn't understand, and their suffering, you know, with taking care of ailing family members.

It was a journey that was very difficult for me, and I really wanted to put it on paper so that people going through that journey could really understand what it's all about.

- You know, part of that journey you described, again, very openly and honestly in the book is the debate that you had with your siblings about how honest and truthful to be with your father about exactly what was happening to him.

Could you walk us through a little bit through that?

'Cause I think that's probably a debate that other families have had to grapple with, and how did you ultimately resolve it?

- Yeah, so I mean, it was really in some ways an ethical debate, which was, you know, my father would get very upset over certain things.

So my siblings would just basically lie to him.

You know, they would say something that just wasn't true.

You know, for example, he would get really upset that we had to pay his caregiver, right?

Someone who was actually living in the house.

And it didn't occur to him that she might need to be paid.

He didn't want to pay her.

So every time that he would learn that she was paid, he would get very upset.

I would try to reason with him.

"Dad, people who work need to be paid."

But he couldn't process it.

But for me, sort of, it was a show of respect to him as a person that I was trying to reason with him, that he was still a part of my world.

And my siblings were like, "Look, if it upsets him, just lie to him.

She's not being paid.

She's working for free."

And I would say, "He's not that far gone.

He's, you know?"

And this debate over whether to sort of deceive, let's say, therapeutically, therapeutic deception, or some people call it validation therapy, basically telling the person with dementia what they want to hear rather than orienting them to a different reality or what you think of as reality.

So reality orientation was like the norm.

We used to tell patients with dementia, "Look, you know, your wife died, you know, three years ago."

And then they'd ask the next day, and you'd tell them again, "Your wife died."

And for them it's new news, and it would be very, very upsetting.

And we used to do that.

And then there came a switch where reality orientation turned to what some people call validation therapy or I call therapeutic deception in the book, which is like, basically, "Look, yeah, your wife's gonna be coming, you know, in a few hours."

And, you know, you sort of like validate or tell them what they want to hear.

And my siblings had no problem with that.

But as a doctor, I felt like, you know, you can't have a healthy relationship based on deception.

I don't deceive my patients.

When my patients have a problem, a disease, I tell them, frankly, this is what the problem is.

But dementia is different because it is so, it obliterates sort of reasoning to such an extent and memory that a person who's told something painful experiences that pain over and over again.

So ultimately, I came around to my siblings point of view and what I would consider sort of the prevailing paradigm of dementia care in this country now, which is more validate what the person is saying.

Don't don't try to reorient them or explain to them what they're doing wrong or why they're thinking is altered.

And, yeah.

- The book so intimately chronicles the toll on individuals living with Alzheimer's and other types of dementia, and, of course, the families and friends also of those people.

What are the numbers now in terms of numbers in the US and globally, if you want to go there too, numbers of individuals who are living with Alzheimer's and doomed to die because it's 100% fatal.

And the projections for the future, which are for much greater numbers than now, and the numbers now are great.

Can you give us just a glimpse of the scope of this situation in the US?

- Yeah, I mean, it's a massive problem in the US and across the globe.

In the US, there are millions of patients who have Alzheimer's or related dementias.

And that number is going to triple probably by the midpoint of this century.

The reason for that is, I mean, manyfold, but one is that we are living longer, and in the past we didn't live long enough to develop neurodegenerative diseases like Alzheimer's.

I would say that the problem is still relatively under-reported so that these numbers are probably even higher.

The problem is huge in the United Kingdom.

It's huge in India, Japan.

I mean, all these countries are grappling with what really is a public health epidemic.

And it's growing, and, you know, again, Alzheimer's doesn't just affect the person.

It affects the whole family.

The whole environment gets, you know, diseased, and relationships, tremendously taxing.

And so I would say that the scope of the problem, the numbers, the millions and millions of patients doesn't tell the whole scope of the issue.

It's really millions of patients, probably gonna triple by, you know, in the next 15, 20 years.

And we have probably something of order 20 million unpaid caregivers in this country as well, who, you know, very often suffer incredible stress taking care of their family members who have dementia.

Because in this country, we really don't have the sort of safety net for this particular problem.

Most people don't have long-term care insurance, and so we have to rely on family members, and that affects health of family members, the economic productivity of family members.

You know, it's a massive and growing problem.

- Yeah, we've had Lisa Genova on the show, and she's made the point in the past that either you are likely to become a victim of Alzheimer's or you are likely to become the caregiver of somebody who is dealing with Alzheimer's.

You know, the numbers are what they are.

What do we know about what causes Alzheimer's today, and is there any hope for effective treatment in the not too distant future?

- Yeah, I mean, I talked about this a lot in the book, sort of the cutting edge research both when it comes to basic caregiving, but also the biology of the disease.

We've learned a lot, but frankly we still don't know or there isn't a consensus as to what exactly causes Alzheimer's.

And I think that is what's preventing a effective therapy.

So we know from Alzheimer who was a neuropathologist, German neuropathologist, Alois Alzheimer, we know from his early studies that plaques, which are sort of these protein deposits in the brain, and tangles, which are these sort of misfolded proteins that turn into sort of this tangled units inside neurons.

These are the sort of the two main, you know, pathological findings in Alzheimer's.

And it was thought for a long time that that was the cause of the disease, plaques especially.

And so drugs were developed to decrease the volume of plaques in the brain, but they didn't work.

Now, most recently, a drug was just released, got accelerated approval by the FDA, that seems for the first time, it's an anti-amyloid drug, to slow the progression of the disease.

But it still slows it to a relatively small extent.

And the drug has to be started relatively early.

So it's- (PA announcer speaking) I'm sorry, I'm in the hospital so you might be able to hear the- - [Jim] We you can hear the PA calls, yeah.

- But the drug that is now has been released, I mean, there's a lot of promise, but we don't, you know, we are still looking for, you know, the magic bullet for how to treat Alzheimer's.

So, you know, I would say that we've learned a lot, the causes, I mean, what actually causes plaques and tangles, there are genetic components, there are certain hereditary factors that dramatically increase the risk of developing Alzheimer's, but not 100%.

They may increase the chance of developing Alzheimer's, you know, threefold or a few fold, but still the absolute risk remains relatively low.

So there are probably genetic contributors.

There are certainly environmental contributors.

People who have fatty deposits in the brain can have, are sort of more, have a greater propensity for developing Alzheimer's.

So there are environmental factors.

There are lifestyle factors.

There are genetic factors, but we don't exactly know.

We haven't sort of come up with an overall paradigm for exactly what leads to the state of dementia.

And I think that's the reason why our drug therapies have proved to be, you know, relatively ineffective.

- Sandeep, the book is "My Father's Brain," and it is absolutely tremendous.

Thank you so much for being with us.

He's Dr. Sandeep Jauhar.

That's all the time we have this week.

But if you wanna know more about "Story in the Public Square," you can find us on social media or pellcenter.org.

He's Wayne, I'm Jim, asking you to join us again next time for more "Story in the Public Square."

(inspiring music) (inspiring music continues) (inspiring music continues) (bright folk music)