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Shumita Basu, Narrating: Hey there! It's Shumita here. We're working on a couple of episodes about big life transitions, and we want to hear from you. Tell us about a major life transition that you went through and how it changed you. It can be deciding to move to a new place, changing jobs, or even losing a loved one. How were you different before and after?
Just use your iPhone's voice memo app to record yourself. Tell us your name, where you're from, and the before and after of your big life transition. And please, try to keep it to about a minute. You can send it to us at applenewstoday@apple.com, and we might include your story on the show. Thanks!
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Basu, Narrating: This is "In Conversation" from Apple News. I'm Shumita Basu. Today, a story of Alzheimer's and one son's search for answers.
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Basu, Narrating: For almost his entire life, Sandeep Jauhar's father, Prem Jauhar, had been a scientist.
Sandeep Jauhar: One of his favorite statements to me growing up is, "Non-science is nonsense."
Basu, Narrating: Sandeep, who is a medical doctor himself, remembers his father spending long days in the lab, doing research and writing papers. He was a take-charge kind of guy, always striving to succeed. And he loved spending time with his family, his three kids.
Jauhar: He'd cut fruit for us. You know, that was like his thing. That was sort of his love language is…
Basu: That's such a, like, Asian parent thing, too. [LAUGHS]
Jauhar: Oh, jeez. So, so, so much.
Basu: The plate of cut fruit just pushed your way.
Jauhar: Yeah, exactly.
Basu, Narrating: But then, around 2013, Sandeep started to notice some worrying changes in his father. At first, he wasn't sure what was going on.
Jauhar: I would be puzzled that, Dad, you remember the partition of India, you remember the spelling bee where I won second place in fifth grade, but you don't remember what you had for lunch.
Basu, Narrating: More and more, it seemed like his father's mind wasn't what it used to be.
Jauhar: He kept forgetting the code to the new safe that we bought. It was my mother's birth year, 1941. We kept telling him, "Dad, it's just mom's birthday. Come on."
Basu, Narrating: Then, one day, Sandeep was taking a walk with his mom when she told him something alarming. His father had gotten lost driving home from the local mall. And rather than calling Sandeep or his brother, who lived nearby, he stopped the car on a busy road and tried to flag down passing cars to ask for directions.
Jauhar: And I said, "Oh, that's not good." And then she stopped and said, "Do you think your father has Alzheimer's?" And that was the first time anyone in the family had even mentioned the word.
Basu, Narrating: They made an appointment with a neurologist, and his mother's intuition was right. These were the first signs that Sandeep's father had Alzheimer's disease. It was the beginning of a years-long journey that Sandeep writes about in his latest book, "My Father's Brain: Life in the Shadow of Alzheimer's."
It's an honest and unflinching portrayal of the challenges of caring for a sick parent. From doctor's appointments to disagreements about care with siblings to coming to terms with how this particular illness was changing his father in ways Sandeep, as a cardiologist, even with all his medical training, didn't fully understand.
Jauhar: When I look back at the level of knowledge I had about dementia and Alzheimer's, it was really lacking. And I've been to medical school, I've done rotations in neurology, I've done a residency and a fellowship, but I didn't really understand what Alzheimer's was about.
Basu, Narrating: Sandeep's book weaves between the intensely personal and the hard science. He told me it was important for him to learn exactly how Alzheimer's impacts the brain and why treatment has remained so elusive for so long.
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Jauhar: Dementia comes from the Latin "dement," loss of mentation, loss of thinking. And there are several different types. Alzheimer's is the most common. Alzheimer's affects at least 6 million Americans, and that number will probably double or triple by the mid part of this century, so in the next 10 to 20 years. But right now, I would say Alzheimer's constitutes about maybe three quarters of all dementia cases. So, the main, sort of the emperor of neurological disease and of dementia is Alzheimer's.
Basu: Can you explain what we know about what happens to the brain when you're experiencing Alzheimer's?
Jauhar: Yes. Alzheimer's typically starts in the part of the brain that is responsible for encoding memory. So, short-term experiences that are typically episodic, like sitting down and having lunch, those perceptions and sensations that comprise that episode of life, they get indexed and manipulated in a part of the brain called the hippocampus. And the hippocampus then takes that experience, and it replays it typically over, while you're sleeping, and creates sort of a long-term memory that then eventually gets housed in the part of the brain called the cortex. So, when Alzheimer's affects the hippocampus, short-term memories become obliterated. Long-term memories that the hippocampus has already placed into the cortex, they remain relatively intact.
Jauhar: So, Alzheimer's typically starts in the hippocampus. It moves to the part of the brain that is responsible for emotional processing called the amygdala. And those two parts of the brain are like two centimeters apart. So, typically, memory goes, emotional balance goes, patients become more volatile, and eventually the disease spreads to the parts of the brain that are responsible for self-awareness and recognizing impairment. You know, the brain has sort of this metafunction, right? Like, I know that I'm here, I know that I'm talking to you, I know what I'm feeling, I know whether I'm capable of doing this or not. That kinda metafunction starts to deteriorate later on in the disease, and so, eventually my father lost the ability to understand that he was impaired.
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Basu, Narrating: While Alzheimer's severely affects a person's episodic memory, their muscle memory typically remains relatively intact.
Jauhar: So, even in the late stages, Alzheimer's patients can sometimes even play the piano or they can dance, but they don't remember things. They don't remember episodes in their lives.
Basu, Narrating: Sandeep could see how difficult and how different diseases of the brain could be. Because at the same time as his father's mind was failing him due to Alzheimer's, his mother was struggling with Parkinson's.
Jauhar: My mother's Parkinson's really affected more of her motor function, but her episodic memory remained relatively intact. So, she could remember when she had bought a piece of clothing, but couldn't put it on, whereas my father was the opposite. You know, he could still, until sort of the late stages, still dress himself, but he would have no idea where the piece of clothing came from, whether he bought it yesterday or he bought it five years ago. So, they had kind of complementary brain diseases.
Basu, Narrating: Sandeep's mother died in 2016, and her death was really hard on his father. So much so that it seemed to accelerate his dementia.
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Jauhar: When my mother was cremated, when her coffin was going into the furnace, my father ran toward the furnace to get into the fire with her. He was… he was so distraught over this loss of his life partner. And, you know, after she died, he really became even more, sort of, socially marginalized. My mother was very sociable, and so my father relied on her sociability to have friends.
Basu: [CHUCKLES] As is often the case, actually. Yeah. Mm-hmm.
Jauhar: Yes. Yes. And he had certain sort of neurotic tendencies, and people sort of overlooked them because my mother was just such a fun person to be around. But after she died, he kind of lost a lot of friendships. I think he was very lonely, and we know that loneliness affects the brain, and we know that widowhood actually has tremendous effects on the brain and can worsen dementia. So, that patients who have plaques and tangles in the brain, which are sort of these abnormal proteins that suggest Alzheimer's, when they have that and they become widowed, the decline in their cognitive function is many-fold compared to patients who continue to have social lives and don't feel so lonely. And that's really sad, right?
Jauhar: We live in a society that values cognition, the ability to process information. We're just inundated with information, and there's a constant conversation. And if you can't process or add to that conversation, you become marginalized. And that's exactly what happens with patients with dementia, and that's what happened to my father. How do you do you have friends? When you meet up with a friend, what do you talk about? You talk about your shared experiences. You talk about your shared history. Remember when we did this or remember when we went camping or whatever? If you don't remember those things, people run away. You know? And the sad part is that even family does because we're all so busy, and caregivers can get so frustrated, and I was not immune to that. And I have a lot of regrets over this, that we would talk about my father, sometimes, like he wasn't even there. I would say, "He's acting like a child now."
Basu: In front of him.
Jauhar: We would say that in front of him. And… [SIGHS] you look back and you think, well, "How did this happen? How? Why did I do this? Why did I feel this way? Why did we marginalize him?" Obviously, we didn't mean to, right? But it didn't really matter. At some point, I became so biased, really, that I thought he was incapable of having normal thoughts. So, when he would say things to me, I didn't take them seriously.
Basu: Yeah. Actually, I wanna read a little excerpt from your book, a short one. At some point you wrote, "No doubt I made him feel worse, lonelier than he already was. Not on purpose, of course, but it hardly mattered. Once he was labeled as having a brain disease, a label corroborated by my unforgiving interpretations of his conversation, he became to me a minor character in our family, a miniaturized version of his former self, isolated and confined to ever-shrinking boundaries, as I stared sadly at him from outside the cage."
Jauhar: Yeah.
Basu: To me, this reads like such an unflinchingly honest but also really painful sort of admission of how it feels for you, as a son, to take care of a parent in this state. Why was it so important for you to be this honest? I could see it in your face even when you're speaking earlier about the sort of shame associated with feeling those feelings, too.
Jauhar: Yeah. You know, I wrote in the book that being elderly and sick in this country is terrifying. Caring for an elderly, sick person in this country is a full-time job. And I believe that more today than when I first started caring for my father. Elder care in this country is extremely difficult. In India, as you know, there's no sort of government safety net, but there's a sort of social safety net, which is basically having sons. [CHUCKLES]
Basu: Right.
Jauhar: Or, really, having daughters-in-law, let's say, okay?
Basu: Right. Right.
Jauhar: That's the reality. People want to have sons because they'll take care of them in their old age. And my parents had two sons, and they sort of assumed that we would take on that responsibility. In the United States, there's a little bit more, a little bit more government support, but there's also a lack of social customs that encourage caring for the elderly. So, what ends up happening is that one person, usually a daughter or maybe a daughter-in-law, gets burdened with care, and so they can't pursue their own careers and they become very fatigued and frustrated.
Jauhar: And there are also huge economic implications to this because the government doesn't really provide for elder care. Out of the $200 billion that we spend on dementia, Medicare funds 11 billion. The remainder is families paying out of pocket. And, you know, we're a family of doctors. We had resources to hire people to help my father. I can't imagine, I still just cannot fathom not having the resources and shouldering the burden entirely on yourself. It's mind boggling because it was so hard, even the way it was with the resources that we had. If you don't have resources, it's a nightmare.
Basu: Yeah. You were able to get a live-in aid to live with your father. And you live close by, as you mentioned. Your brother also lived nearby. You write a lot in this book about the sibling dynamic. I think this is gonna be very familiar to a lot of people who've ended up in this kind of situation where you've got more than one sibling's interests and opinions to sort of keep in balance. Can you tell us a little bit about how the three of you decided to go about decision making when it came to your dad?
Jauhar: I didn't want my father to go into a nursing home. That was incredibly important to me. And my siblings, my brother and sister, even though they loved my father equally, I know that, they were more realistic. They said, "Look, he's becoming very volatile, he doesn't recognize he needs help, he's becoming violent with his caregiver. He's gonna have to go to a memory unit." And I said, "No, we're gonna muddle through this, but we're not gonna have him leave his home." And my siblings did eventually go along with my wish to keep my father at home, and we did whatever needed to be done in terms of getting help.
Jauhar: And I capitulated, too. I mean, one of the things that they felt very frustrated with me was that I would always tell my father the truth, even if it upset him. I said, "But I don't wanna lie to him." Both because lying is not a good thing, and it's not a dignified thing to do. This was my perception both as a doctor but also as a loving son. But also, he was getting paranoid, so I said, "If we lie to him, eventually he's going to find out or he's gonna realize we're lying to him and it's gonna further his distrust." So, there was a lot of push-pull over that. And eventually I came around to understanding my siblings' point of view, but really the point of view of a lot of caregivers in this country and the world where the sort of paradigm I was subscribing to was called "reality orientation." You bring the person with dementia into reality, your reality. You know, "Dad, Mom died."
Basu: Mm. Yeah, when he would ask for your mom.
Jauhar: Yeah. "Dad, Mom died. No matter how much we talk about it, she's not coming back." And I thought it was important for him to understand that. But my brother would say things like, "Mom's on a plane. She's coming. She'll come tomorrow." "Well, can you call her?" "Well, no, I can't call her. She's on the plane."
Basu: Sort of white lies.
Jauhar: Yeah. It took a long time for me to come around to what I think is really a commonsensical stance, which is, you don't want to tell someone the truth if it causes them deep anguish. And there's a sort of larger conception of dignity that I eventually came around to. That dignity is not just telling the truth, but it's meeting someone where they are in their own minds and in their own lives. Eventually, I came around to the white lies. I came to appreciate that lying is different [CHUCKLES] when you're doing it for your own benefit or if you're doing it for someone else's benefit.
Basu: Right. It was a way to just meet your dad where he was.
Jauhar: Where he was, yeah.
Basu: So, I wanna continue talking about your father, but I also understand that you write a lot about doctor's appointments that were happening around this time, conversations you were having with his care team, but also the information that you yourself were learning about care and treatment for Alzheimer's, especially at the stage that your dad was at, at this particular point. I was surprised to hear that you wrote that, in terms of treatment, not a lot has changed since the early 20th century. Can you talk about that a little bit? I think people have been excited in recent years about news of various drugs. Can you just tell us where we are at in terms of treatment?
Jauhar: Sure. I'll say, people should be excited because I think the field is changing. The problem with dementia treatment, the problem with treating really any disease where you don't know the cause, is it's hard to identify the target for treatment. With Alzheimer's, for the longest time, the thought was that it's mis-folded proteins called amyloid and tau. So, drugs were developed to get rid of amyloid, and they were studied and tested, and they didn't work. And so, the whole amyloid hypothesis came into question.
Jauhar: More recently, there have been three drugs, but really two, I would say, that have reasonably robust data. They're monoclonal antibodies. One is called Lecanemab, one is called Donanemab. But they are very effective in ridding the brain of amyloid. And for the first time, there are signals suggesting that the declining cognition in Alzheimer's is slowed by these drugs. The first time. Now, is it a major change? No. Are there side effects? Yes. There can be brain bleeding. And you also have to target patients very, very early, before brain cells die, because once brain cells and synapses die, it's very hard to regenerate them. So, there are questions about how early patients should be started. How do you know that someone is developing Alzheimer's when they don't have symptoms? Should everyone who's elderly be started on these drugs? Obviously not. So, there are big questions.
Jauhar: But, at this point, I would say that Alzheimer's doesn't equal amyloid, but amyloid is definitely playing a role, and we have anti-amyloid drugs that are now starting to show a positive signal. We need to develop drugs that now attack some of these other potential causes. So, the field is in flux, but I would say for the first time in my lifetime, there are some positive signals, and there's reason for hope.
Basu: And as you mentioned, though, the drugs that we're hearing about most recently are really aimed at early stage, people who have been able to detect early-stage Alzheimer's. And from what I've been reading, I think that this understanding has led to a lot of people doing genetic testing and trying to do early screenings. What can genetic testing tell us about Alzheimer's risk? I wonder if this is something that you've been thinking about, especially with your dad having Alzheimer's and your mom having Parkinson's.
Jauhar: Sure. I think a lot of my reactions to my father was worry that what was happening to him was going to happen to me, too. And we were very alike in a lot of ways. And so, for the longest time, there was a thought that there were two different kinds of Alzheimer's, it's early onset and late onset. My father had late onset. Now we know that they're basically the same disease, but early onset does have more of a genetic cause. Really strong hereditary factors in early onset Alzheimer's. For late onset, there are also genetic factors, but they don't play as strong of a role.
Jauhar: So, I'd say that for early onset, I think that, for the longest time, we discouraged patients from getting genetic testing if your parent had early onset because there's nothing we could do about it. At this point, I think it makes sense to consider genetic testing and see if some of these new drugs can be started very early. If you have a parent who's had late onset, I would still say that I don't think it really makes a lot of sense to do genetic testing because the drugs really don't work all that well, and the risk is still relatively small. But I have a feeling that people are going to want to know and there's more of an impetus to know now than maybe 10 years ago because there are these new drugs that are available.
Basu: Yeah. You've talked a lot about the crisis of caregiving. And in the book, you've also written about how as such a large number of people enter old age in the decades to come, we're gonna see a ballooning number of people who need dementia care. I wonder if you could reimagine healthcare, caregiving in the U.S., what would you change to make it better suited for people who need this kind of specialized care as they enter old age?
Jauhar: Well, I think you have to distinguish between the patient and the caregiver. So, there's a lot that could be done for caregivers. Caregivers are essentially alone in this country. There's a lot more that the government could do to help caregivers shoulder the both emotional and financial burden. On the patient side, I think that in this country, there's sort of these two competing forces in elder care between maintaining security and autonomy, right? So, we tend to err on the side of security. And I understand that. I didn't want my father to walk because I was afraid he'd fall and break his hip. Eventually he did fall.
Basu: And he did fall. Right, yeah.
Jauhar: I think most memory units in this country don't allow for a lot of humanity in caring for patients. I went to the Netherlands, I traveled across the country, but I also went internationally to look at the dementia village just outside of Amsterdam called the Hogeweyk, and they have a very different conception. They say people with dementia are still human beings and we should give them basic freedoms. They utilize a kind of caregiving strategy called "reminiscence therapy" where they put patients in homes that are sort of… have, let's say, cultures that the patient might be familiar with. So, if someone was like a farmer, they have sort of a craftsman home where the person gets housed with people with likeminded interests.
Basu: Mm. Mm-hmm.
Jauhar: That's a deeply human, humanistic way of being. They let people wander. When I went on a tour of this facility, one of the guides said, in America, dementia patients get locked up in memory units. Here we let them wander. And people say, "Well, what's gonna happen? You have a pond. They're gonna fall into a pond." But he said, "Dementia patients aren't stupid. They're not gonna climb over a fence into a pond and fall into a pond." And it's just a different perspective. It's that safety and security are important, but they shouldn't come at the cost of allowing someone to be human and to have basic freedoms.
Basu: Right. Right. And I should say, these are villages… They're managed by some kind of medical facility, right? I mean, there's professionals that are waiting on every block, basically, in case anything is needed. But otherwise, to your point, autonomous lifestyle.
Jauhar: Yeah, and there are caregivers who, at least at the one in the Netherlands, would staff a supermarket - they have a little market there - or they would tend to the gardens, but they're always keeping an eye out for the patients. And it's sort of like [CHUCKLES] "The Truman Show," you know, where people are, they're almost like props. But they are there to serve the freedom of patients with dementia and let them have the best possible life that's left to them.
Basu: It takes a little bit of that lying aspect that you were talking about before but to serve the people who are living there, to your point, not to serve yourself. Can you tell us a little bit about what the very end of your dad's life was like?
Jauhar: Well, I took him out to dosas [CHUCKLES] a week before he died.
Basu: As you often did.
Jauhar: Yes. We used to go out for lunch, and he enjoyed it quite a bit. And he'd like to sit there, spend time with me. Eventually he didn't really like the dosas so much, but he liked sweet things, and he liked to drink mango lassi. This was in early March 2021. And about three, four days later, he had a precipitous decline, and we didn't know why. And I came to understand that this very often happens with dementia. But I wanted, as a doctor, to know what happened. He was able to walk into this restaurant with me, and now, all of a sudden, he's bedbound? What's going on? And so, I argued for doing some investigation. Did he have a UTI? Did he develop COVID? It was raining the day I took him to the dosa shop. Did he get a cold? And my brother's point was, you know, "What is your objective? What are you trying to do? What is your hope?" And my hope was that, even at that late stage, I just wanted my father around just a little bit longer. I didn't wanna lose him, even in his debilitated state.
Jauhar: But my brother had a much more sort of realistic point of view. So, eventually, my father stopped eating, and so we put in an IV to give him saline just so he wouldn't get super dehydrated. And the thought was maybe the dehydration was causing this decline. It clearly wasn't because we gave him fluid, and he didn't get any better. And so, he was enrolled in hospice. And then the big question became, do we take out the IV and stop giving him fluid and let nature take its course? And I struggled with that, even though I agreed with hospice. I vacillated at the end, and I didn't, I didn't want… I didn't wanna lose him.
Jauhar: And also, I would remember, when we'd go to dosas, he quite enjoyed hanging out with me and drinking mango lassi. It wasn't like his life had absolutely no meaning. There are sort of basic pleasures that patients with dementia don't lose. Happiness is not necessarily inconsistent with cognitive impairment. And so, my argument was, let's do a little investigation. Let's figure this out. Let's continue the IV. But eventually, it became clear that… The hospice nurse spoke with me and really helped me understand that if my father was able to communicate, he'd probably say, "It's time to let go, Sandeep. It's… you know, it's the end now." And, uh… it was hard. It was horribly difficult to make those final decisions. I felt totally unequipped, even as a doctor. I'm a heart-failure specialist. I deal with a lot of death. But it's different when it's your own parent.
Basu: Yeah, of course. Of course. I thought it was really moving to read, at one point, you're talking about being at a doctor's appointment with your dad, and you asked his doctor, "What would you do if this was your dad?" And it kind of occurred to you in that moment that you've been asked that question many times by patients, right? It's a common question, I think, right? The sort of imploring of the doctor to take this personally. If you were to take this personally, what would it mean to you?
Jauhar: Yeah. Yeah. You know, I strive to do that. I've always actually strived to do that in my own practice. What would I do if this were my mother? But I probably do that even more now because you realize that, as doctors, we make huge decisions, and I'd say that having been through this experience, this end of life, I understand better how important it is for patients to have their doctor stick around. Doctors tend to distance themselves from patients who are actively dying, who are in hospice care. But that might be the time when families need us the most.
Jauhar: And I was no different. I dealt with a lot of death as a heart-failure specialist, and when patients got enrolled in hospice, I very often would say, "Well, there's really nothing sort of therapeutic, now it's all palliative, so the hospice doctors can take over." But it was important for me that my father's doctor still communicated with us even in those last few days. I just have a greater appreciation for how difficult it is to go through the end-of-life experience with a family member.
Basu: Yeah. Now that you've gone through all this reflection on the good and bad moments, the things that you did that you feel strongly helped, and the things that you did that you know didn't help but couldn't help in the moment, what would be your advice to someone listening if they have a loved one with dementia that they're involved in caring for? What advice would you give them?
Jauhar: [INHALES DEEPLY] You know, it's hard to be prepared. Because even as a doctor I was incredibly unprepared. So, I would say that it's important to know what's going to happen. One of the reasons I wrote the book is to provide, not just this wrenching chronicle of what I went through that may provide some solace and comfort to people, maybe not, but to write about the history and science of dementia. So, to provide almost like a neurological script for what to expect. Because I think that we fail as caregivers, honestly. I failed. I think that the more you know, the more apt you are to be sort of the best caregiver you can be, and patients with dementia need that. They need love and they need our patience. And they have…
Basu: Someone to know how to meet them where they actually are in that moment.
Jauhar: They still have feelings, even though they may not be able to express them. But my father still had deep feelings for me, even toward the end. A couple of months before he died, he asked me… I was visiting him, and he asked me to get into bed with him and lie down with him. I said, "Oh, Dad, I can't do that. Come on, I have to go home." And it's a small hospital bed at that point. And I said, "How am I gonna get in?" And he said, "Come on. Lie with me." And then, that night he said, "You were always my favorite." And, um… Yeah… It was… He still had those feelings.
Basu: Yeah. He could still express those things to you.
Jauhar: Yeah. And so, I think we need to be respectful of patients with dementia, that they're still human. Even though they seem to have lost their sort of selfhood or personhood because they don't maybe have continuity with their previous selves, but they're still there. I think it's really important to understand that, appreciate that and have that translate into loving caregiving.
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Basu: Sandeep, thank you so much for this conversation and for this very thoughtful book. I appreciate it.
Jauhar: Thanks for having me.
Basu, Narrating: You can read Sandeep Jauhar's book, "My Father's Brain," on Apple Books. We'll include a link for you on our show notes page. And if you're enjoying this podcast, "Apple News In Conversation," please subscribe, rate and review us on Apple Podcasts.
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