Melissa Harris-Perry: This is The Takeaway. I'm Melissa Harris-Perry, and I'm on the road today in Worcester, Massachusetts. I'm talking to you from my hotel room, but it's good to be with you.

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Melissa Harris-Perry: Now, a recent study by medical researchers at Cedars-Sinai finds that our eyes could hold powerful clues of a possible Alzheimer's disease diagnosis long before the first dementia symptoms appear.

The study discovered distinct cells in the retinas of patients with mild brain impairment. There's hope that these findings could someday lead to the use of retinal scans for early diagnosis of Alzheimer's. For now, though, there's no cure. Alzheimer's and other irreversible forms of dementia slowly steal away memories while keeping up the pretense that they're stealing away nothing at all.

The fragmented memories and loss of self can leave caregivers with a deep sense of loneliness, grief, and sometimes even anger. More than six million people live with Alzheimer's dementia in the US, and the number is expected to rise to more than 13 million by the year 2050. For each person diagnosed, there are many more affected; family, friends, community.

In Travelers to Unimaginable Lands: Stories of Dementia, the Caregiver, and the Human Brain, Dasha Kiper explores how our understanding of consciousness and self complicate the relationship between caregiver and patient. Help us to understand what dementia is.

Dasha Kiper: Oftentimes, when we talk about dementia, we tend to use it as a way of describing a disease, but in actuality, dementia is a cluster of symptoms, be it memory loss or cognitive decline, but it's actually just a umbrella term, while Alzheimer's or Lewy body or FTD, those are the cause, and that's the actual disease.

Melissa Harris-Perry: Make that concrete for me. When we say someone is experiencing dementia, I hear you saying that that means they might be experiencing it from a variety of different causes, but does it always present in a similar way?

Dasha Kiper: No, it doesn't. Even Alzheimer's diseases don't present necessarily in a similar way, but dementia symptoms, in general, could be for different reasons. They could be because there are different diseases that are the cause, or it could be something like extreme dehydration that could give you dementia, and it's temporary.

Melissa Harris-Perry: We're not here to think and talk about dementia in this clinical sense for patients. The book that you've given us here is really thinking about the experience of dementia, not for those who are experiencing it, but for those of us who love them, who are in the role, potentially, of caregiver. Tell me what it was you were hoping to illuminate by thinking about dementia through the experience of caregivers.

Dasha Kiper: Oh gosh. I really wanted to address a misconception that we have about dementia caregivers and, ultimately, a misconception we have about the human mind. We like to think that the brain that's not working, the brain that's impaired due to reasons like Alzheimer's disease, well, we expect that brain to be compromised, we expect that there is memory loss, that there is judgment impairment, we expect that they might lose their sense of control, they might become volatile, but when we look at the caregiver, what we expect is somebody who's dealing with losses and dealing with grief.

What I found is something that is actually much more interesting is happening. They're dealing with something that is actually affecting their brain. When I would get calls from desperate caregivers, most people thought that I would be getting calls because they're dealing with an abundant amount of sadness, but actually, the reason they called is they would tell me, "Everybody told me that my husband would be losing his mind, nobody told me I would be losing my mind. Not only do I not recognize my husband, I can't recognize myself."

What they mean by that is, they're behaving in ways that are irrational, they're behaving in ways that they know they shouldn't, like arguing back with somebody who can't abide by reality, and they're behaving in ways that betray what they feel is just common sense and common decency. What happens is that I see them going into a shame spiral after seeing that they behave this way. Clinically, it's my job, and as a person, it's my job to normalize that behavior.

One thing I always say to them is, "You're far from alone. Nobody deals with this disease graciously." I wanted to give caregivers a context, "Well, why is it that I'm seeing everybody behave a certain way? Why is it that caregivers begin to mirror the symptoms of dementia patients? Why is it that they're behaving in ways that betrays their better judgment time and time again, even though conceptually they know better?"

Melissa Harris-Perry: This experience of thinking that it will be sad. Certainly, there is sadness and grief, but there is also this anger, this frustration, this difficulty in, as you said, even beginning to wrap your mind around what it is you're experiencing and how. Can you talk a bit here about the Cartesian mind-body problem? Because I think it will feel familiar to so many beloved caregivers. How is that connected to this mind-body issue?

Dasha Kiper: [chuckles] That's a very good question. The mind-body question, to put it very crudely, is that, for ages, there have been a lot of philosophical contention, is the mind simply the workings of the brain or is the mind something else? Of course, Descartes believed that there is more to the mind than the mechanical neural workings of the brain. These big philosophical issues suddenly make their way into the home, into the living rooms and kitchens of caregivers.

How? Because caregivers are constantly told, "Stop arguing with your mother. It's her brain, it's not her." Caregivers know this, and that's why they feel so ashamed, because they're like, "I know something is going on with her brain." They conceptually understand this. People from the outside don't quite understand, "Why is the caregiver acting so irrationally? They know there is a brain impairment." The idea is that they're expecting the healthy brain to act rationally.

Our mind is not designed to act rationally. We have bigger imperatives, and that is to seek connection. The reason it's so hard not to treat our loved one's mind as a faulty brain is because, as the psychologist Paul Bloom explains, all of us, regardless of what we intellectually believe, whatever side of the argument that we land on, all of us are secret philosophers because we hold an unconscious intuition that there is a separation between mind and brain, that people are more than just their brain.

Intellectually, you could understand, "Oh, my mom has a disease, and her brain is making her act this way," but once you're in the room and your mom is provoking you and she's pushing your buttons, all bets are off. You're now back to seeing her as a mind. What do minds do? Well, minds are willful. Minds know what they're doing. Brains don't, but minds do.

Even though certain kinds of advice hurled at caregivers seems simple and intuitive and understandable, "It's the brain, it's not your mom. It's the brain, it's not your husband," but it's not that simple because there are unconscious biases that our brain has that allows us to communicate with other people. Dementia disorders, they take that away, and they leave caregivers oftentimes as disoriented, as angry, and as volatile as the people they're caring for.

Melissa Harris-Perry: I wonder if it's particularly true when the person that you're caring for in this context is an adult who's been really competent their whole lives. When you care for your infant, it's not that you never feel frustration, but you expect an infant to not be able to feed themselves. You're not surprised about that, but when the parent who's fed you your whole life now can't make a meal, or the spouse who was your intellectual partner and bestie now can't do so many of the things we think of as part of adult competence, I wonder if it's particularly hard for our minds and brains to compute what we're experiencing as caregivers.

Dasha Kiper: Absolutely. It's the fact that we have a history with our family members. I think that what makes it very hard is-- When I introduced the mind-body problem, I introduced a mother and a daughter. One of the grievances the daughter had with her mother is that no matter what happened in life, her mom would go into denial mode. She would go into denial mode and she would make everybody's life harder because she just couldn't face reality.

In a way, dementia was new, but in some ways, it presented something that has always been. Here's another hurdle. What does her mom do? She denies, denies, denies. It's very hard for her daughter to see this as a workings of an impaired brain, rather than the willful mind that she has known all her life, who just can't see reality for what it is. We're not just losing people who have had tremendous competence in the past, we're also dealing with a lot of the psychological baggage and dynamics that are brought up. They also can't help but hold that mind accountable.

That's where all the screamings and the anger comes from, because once you're in that living room, and once you're sitting eating with your mom, and she talks to you the way that she always talks to you-- I think another misconception is that once you have this disease, all of a sudden, there's only loss, but I think what really drives caregivers crazy is that just because you have dementia does not mean that you're not sophisticated, does not mean that you're not capable. If you're a parent does not mean where you don't know how to get your child just where it hurts, push that exact button.

Then how can all of us in good faith say, "No, no, no, treat that mother who knows just the button to choose, treat that as a damaged, innocent brain." Of course not. You're going to see her as a mind that's been torturing you the way that she's always tortured you. That's how these big philosophical ideas enter these daily realities and drive us crazy that we're really not designed to see other minds as brains.

Melissa Harris-Perry: We've got more in just a moment with clinical psychologist Dasha Kiper. It's The Takeaway. We're back and we're still with Dasha Kiper, clinical psychologist and author of Travelers to Unimaginable Lands: Stories of Dementia, the Caregiver, and the Human Brain. In the book, Dasha writes about the ways caregivers can find themselves falling back into old patterns with their loved ones who are living with dementia. It can lead to emotional whiplash by undermining our own experiences of identity and the mind.

Dasha Kiper: What I love to do is I love to look at these big philosophical questions. What is free will? What is identity? Philosophers have been going back and forth, but what I find very interesting, and increasingly this is a subject in philosophy of mind, is what do ordinary people think identity is? What are our intuitions about identity? What's interesting about that is dementia has a way of undermining those intuitions.

I speak of a woman whose husband thinks that she is an imposter. That husband, after a certain time, has gone by in the evening like clockwork, looks at her like she's a total stranger and says, "Now you've got to leave." In the early stages of that disease, she understood, of course, that her husband had a disease, how could she not? This delusion is screaming at you that says, "My husband is not the same," but for the longest time, she would say, "No, honey, we are married," and she would get into these arguments with him.

The reason that she could not stop arguing with him is because even though she understood that something was happening to his identity, and we talk about Alzheimer's as a loss of identity, but the truth is it's not that simple. The thing that actually tortured her and I think part of the reason that she was getting into all these arguments is that one minute he was the man who was throwing her out of the house, another minute, he had enough wherewithal to make her a video for Valentine's Day or her birthday, I forgot which one, that told her what she means to him, how he couldn't live without her. Philosophers could ask, "Who's the real man? Is it the mean husband who throws her out? Is it the sweet husband?"

Another intuition that Paul Bloom talks about that we have is regardless of what's happening, human beings have a way of looking at other people and seeing them as essential, seeing them as true selves. When Elizabeth is arguing with her husband, it's not out of meanness, it is out of desperation. She's almost trying to access that true Mitch, that Mitch that she was married to, that Mitch that she could laugh and joke with. If her husband was just paranoid all the time, it would be much easier for her to deal with this disease. It is this constant ambiguity that keeps her hooked, that keeps her wanting to resolve this and really access that true, deep-down self.

It goes back to the idea of dualism, that we just can't imagine that all our loved ones are these sick brains, no. Somewhere her husband has to live, the one that she's known, and somehow rescue her from all of this.

Melissa Harris-Perry: Especially if he had, in fact, been a rescuer in their relationship before that. If he was a person who stepped in when bad things happened and helped to make things better.

Dasha Kiper: Absolutely. Conversely, I speak of a mother who was extremely undermining to her son. He would argue and argue and everybody would say, "Why are you arguing? It makes no sense. She's sick." He would start blaming her for everything. My heart went out to him because the thing is, is that he was arguing, because he was hoping that somehow he would reach out to this inner mom, the mom that he hoped would be his, and finally, allow her to see him. The minute that we give up on them, do we give up on the idea that they're really ours, that a connection is there?

Again, our brain's imperative is not to be reasonable. All this advice that caregivers are given, it's very reasonable, "Don't take things personally. It's the brain, not the mind. They're not themselves anymore." That's all very reasonable, but our minds are not designed to be reasonable, they're designed to desperately hold on to connection. Even if it's a connection that was never there, like in very fraught relationships, it's a connection you're still yearning for. Who are we to tell them when to stop fighting?

Melissa Harris-Perry: Given how reasonable and yet impossible the advice that caregivers get is, do you have advice?

Dasha Kiper: I spent so much time being so protective of caregivers, I say that even though I can't change their circumstance, I can't make this disease less painful for them, I can't make this disease less maddening for them, but I think that by validating the difficulty-- I think that we're very uncomfortable around pain. The way that I tell people, the antidote for this is other human connection because that is our brain's purpose.

You are losing the connection with your mom, you're losing the connection with your husband, you feel like you're losing your mind, how do we restore that? Go to therapy, go to groups, be with other human beings, engage in meaningful activities. That's what I think self-care is. Of course, we tend to think about it as indulgent self-care, but what by it is do things that restore your brain's sanity, because being around people who have dementia, it is constantly exercising self-control because dementia is making our brain do something we're not designed to do.

After a while, you're going to hit a wall no matter how strong you are. Go to other people, connect with them, and that will actually fill you up to be able to be more patient to your loved ones. Get nourished. Get your mind nourished, get your social needs met outside of the home so that when you come back, you're not depleted and you can be better to yourself, and when you're better to yourself, you're better to your loved one. That's true of dementia or no dementia.

Melissa Harris-Perry: Dasha Kiper, thank you so much for joining us here on The Takeaway.

Dasha Kiper: Thank you so much for having me.

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