‘Finding the Right Words’: Author Interview with Cindy Weinstein and Bruce Miller

Transcript

Intro: I’m Dr. Nathaniel Chin, and you’re listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Dr. Nathaniel Chin: Welcome back to Dementia Matters. I'm here with Cindy Weinstein, the Eli and Edythe Broad Professor of American Literature at the California Institute of Technology in Pasadena, California. In 2018, Professor Weinstein spent a year studying neurology as an Atlantic Fellow for Equity in Brain Health. She conducted her fellowship studies at the University Of California–San Francisco Memory and Aging Center with center director Dr. Bruce Miller, who is also here with us today. A behavioral neurologist, Dr Miller studies the intersection of neurodegenerative disease and behavior, examining how diseases like Alzheimer's and frontotemporal dementia can affect personality, emotion, and even artistic ability. The two of them wrote a book, Finding the Right Words: A Story of Literature, Grief, and the Brain, that was published in 2021. In the book, they intertwine literature, memoir, and neurology to tell Cindy's story about her experience with her father's dementia. Cindy and Bruce, welcome to Dementia Matters.

Professor Cindy Weinstein: Thank you.

Dr. Bruce Miller: Great to be with you, Nate. Thanks for having us.

Chin: Cindy, tell me about the Atlantic Fellowship for Equity and Brain Health, why you pursued that opportunity, and why you chose to study at the University Of California–San Francisco Memory Assessment Clinic.

Weinstein: Sure Nate, and I also want to thank you for this interview. I wanted to write this book. I had had it in my head for a very long time and initially thought I would be able to find someone at CalTech with whom to write the book. We actually don't do that much research at all on Alzheimer's. Some of my colleagues in the biology and bioengineering division sent me North to Bruce. I looked online at some of the things Bruce had done, and I thought if I could get him to write the book with me, that would be amazing. So I sent an email to him. I was going up to Berkeley to do some research on American literature and thought if I could meet with Bruce at UCSF I would take that opportunity, and he wrote back and said, please come. We hit it off and at a certain point in the conversation, he said to me, “Would you like to learn some science?” And I lit up because I wanted this to be a memoir, but also one that spoke to general readers about the science behind dementia. I didn't know that science at all and so when Bruce asked me if I wanted to learn some science, I was thrilled. He said we have this Global Brain Health Institute, you should apply. It's really interdisciplinary. There are scientists, neurologists, geriatricians, artists. I applied and got in and that's how I ended up being a fellow in the program.

Chin: You're kind of a Bay Area person though too, getting your PhD at Berkeley.

Weinstein: That's true. It had been on my bucket list to get back to Berkeley for an extended period of time and it's kind of where the scene of the crime happened. At some point I realized that writing the book in Berkeley is what I needed to do.

Chin: In the beginning of your book, you include a map of the United States and that map plots the paths you've both taken from childhood to your respective adulthoods in California. Cindy, your path takes you from your childhood home in New Jersey to California with frequent trips between California and Florida where your parents lived during much of your father's illness. Bruce, your path starts in Indiana and has a stop in Madison, Wisconsin. Tell me about your connection to the Badger state.

Miller: Yes, well, I was born in Indianapolis, Indiana. My dad was a medical student there and my mom was studying medical illustration and eventually became an artist. But at the time they were very medically-oriented, both of them. My dad moved to Wisconsin where he was with the university – chair of psychiatry. I was brought up in Madison. My folks moved when I was about 17, just about ready to start college. So anyways I've got lots of roots in Madison, lots of really fond memories.

Chin: Well that helps explain your background of having both a scientific neurological education as well as a literature artistic education. It seems you truly are the product of both of your parents.

Miller: Yes I rejected them both fiercely. I dragged my feet through so many museums with my mom and dad, it's embarrassing even to say it. Of course science was the last thing I ever wanted to do because. I didn't want to follow my parents but these things come around, I think.

Chin: So Cindy, you wrote about writing this book with Bruce and I'm going to quote you here – “Solos are fine but duets can be finer.” I really like that. What brought the two of you together to write Finding the Right Words, and you explain part of that, but were you surprised in any way at Bruce's writing style or even the sections that he responded to in the book?

Weinstein: There were a couple of things that surprised me. As I inched toward the discipline of neurology, he inched toward the discipline of literary criticism – and he was a really good literary critic. At a certain point in the writing process he said to me, “These are all very interesting anecdotes, Cindy, but we need an arc to the story.” And Bruce was absolutely essential in figuring out the structure. When I first came to UCSF, I thought the initial chapter was going to be on memory because all I knew about Alzheimer's was memory. Bruce helped me realize that the memory chapter was going to be the last chapter. How this exactly happened is hard to put into words except that as I spent more time being a fellow and understanding neurology and drafting the chapters, I realized that I was recovering memory – more specifically recovering memory of my father before he got sick – and that the last chapter I was going to write would be a celebration of my father and an account of all of these memories that were in my brain somewhere but were just almost even harder to contend with than the very hard memories about his disease.

Chin: Cindy, this book is full of emotion full of your love for your father. You said that writing this book was your way of wrapping your arms around your dad. How long have you thought about writing this book and once you started putting pen to paper – or fingers to keyboard whatever your style may be – how long did it take you to write this book?

Weinstein: I had been thinking about a book about my father for probably 20 years, maybe even more. It took me a long time to find the right time to write it. My usual writing is extremely academic, not emotional. Happily, I kept on coming up with more ideas for books about American literature – that's why I'm at CalTech – and then there was this interim period where I had finished a monograph and my brain thought, now's the time. And everything converged. CalTech was incredibly supportive. I got the fellowship at UCSF. Then when I got to UCSF, I had a couple of drafts written of chapters. I had drafted the spatial disorientation chapter because I wanted to write a chapter about my father's love of golf, my own difficulties with golf, and all the literature I had read about golf, especially The Sound and The Fury. I also had drafted the word-finding chapter. Then I did a lot of revision. I shared some of those chapters with my colleagues in the program and they had wonderful suggestions. I pretty much drafted the rest of the book while I was in San Francisco. I wrote the preface which is about sitting shiva for my father a second time, which I didn't even know I was doing. I wrote that at the very end of the fellowship. Then I came back to CalTech and worked on finding a publisher. And Bruce, once we got the publisher, was more able to find time – also with the pandemic, oddly enough, he had more time to write. Then we were probably done with a draft about six or nine months after I had finished the fellowship.

Chin: Is it harder to receive feedback when your writing is so personal? I can only imagine your colleagues, with your advanced training in literature, having really constructive feedback but is it harder to take that knowing that you're putting your heart and soul into this non-academic writing?

Weinstein: That's a great question. I have gotten so good, I think, at taking criticism that if someone likes something I write, my response is, “Okay now, tell me what you really think.” And I take your point about how emotional and personal the book was. I was so grateful that this story that was so personal, that was so specific; to know that it resonated and that people thought that they could weigh in in a positive way, a constructive way, a critical way, that it was all good.

Chin: Do you feel that you experience more grief in writing this? I ask that question because you also recall different memories having gone through this writing process, potentially memories that your brain wanted to not reflect on. Did you experience emotions that you may not have experienced if you had not tackled this?

Weinstein: I knew that writing this book was going to be brutal and each chapter was hard in its own way. I think the behavior chapter was probably the hardest one for me to write because it was a constant reminder of not having seen so much of the behavior. In terms of experiencing emotions that I didn't expect or grief that I didn't expect, I think there was a volcano of grief in me waiting to come out. They were so sedimented and old that I needed an entire year to bring them out of hiding and writing the book allowed it to come out.

Chin: Bruce, what do you recommend for people grieving the loss of a loved one who died with dementia? Where do you point them or what do you tell them when they describe their pain to you?

Miller: I think one of the things that I've realized by looking after patients and their loved ones is how painful and lonely the process of caregiving is and how often the caregiver is unappreciated. I think the patient, often because of their illness, is unable to appreciate the person who is pouring love and energy into them, and often people around them are critical. They assume that this bad outcome is because something the caregiver did. One of the first things I do when I see someone in clinic is I look both the patient and the caregiver in the eye and I say, you know, you two have been on a really tough journey. You've done a magnificent job of dealing with this. And I begin this process of affirmation which we do in medicine in general, through support groups. But the burden of this can even be lethal. I learned this when I was studying couples where one had frontotemporal dementia. When I started to follow them longitudinally, sometimes it was the caregiver who died first, not the patient. Now we've documented this medically that caring for someone with an early onset Alzheimer's or frontotemporal dementia causes psychiatric problems in the caregiver and even physical problems. So we need to do a lot to support the loved ones in this journey.

Chin: And it sounds like affirmation and support and empathy really, for not only the person with the disease, but then all those that are involved in it too.

Miller: Absolutely. In our global brain health program, we have an aphorism and it's AFORCE. Authenticity, fairness, openness, respect, courage and empathy. I think these are the things that we want to teach our trainees. I think they're almost more important than the knowledge about these illnesses. You want both but I think if you have a physician or someone involved with the care of patients who's not empathic, it's probably worse than nothing.

Chin: And the book itself is constructed in a very unique way. It's non-chronological with the theme of the chapter based on symptoms, and as you've alluded to, not starting with memory but ending with memory. Each chapter is written in two parts; Cindy your telling of your father's disease and then it ends with Bruce's scientific viewpoint or his response to your writing. The publisher even uses different fonts to visually differentiate you two authors. So what did you want the reader to take away from this construction and this layout of your novel?

Weinstein: Well I should say that it was hard to figure out the structure. I talked to various publishers about the structure and that it was this dual memoir. People looked at me with a very puzzled expression. Like what are you doing? But I was determined to have this be a kind of call and response book. I didn't think it could be chronological because the way memory works, it just kind of goes all over the place. That's why sometimes it's in past tense, sometimes it's in present tense. It moves around like that and I thought that was true to my experience of remembering my father. At one point there were ten chapters; I wrote a chapter, Bruce wrote a chapter. My chapters were much longer and so that didn't really work, and so we decided to combine the chapters. I wanted some demarcation for the reader to know whose voice it was  – although I think my voice and Bruce's are quite different. I also really liked the idea of combining our voices in chapters to call attention to the interdisciplinarity of how we were approaching telling the story of my father's dementia.

Caoilfhinn Rauwerdink: We interrupt today’s episode with a brief promotion by the Mind Readers Book Club. Interested in today’s discussion with Professor Cindy Weinstein and Dr. Bruce Miller? Want to learn more about their book and others about Alzheimer’s disease and science? Join Mind Readers, a book club by the Wisconsin Alzheimer’s Disease Research Center! The Mind Readers Book Club has chosen Finding the Right Words: A Story of Literature, Grief, and the Brain as its summer book club pick! The book club is free and open to everyone, with virtual lectures, discussions with the authors and related scientists, and special podcast episodes like this one. Interested in joining Mind Readers? Sign up for the e-newsletter at the link in the episode description for up-to-date information on book club picks, events, and more, and pick up a copy of Finding the Right Words: A Story of Literature, Grief, and the Brain before this summer’s discussion with authors Professor Cindy Weinstein and Dr. Bruce Miller on Wednesday, July 13th at 6pm CT. Thank you, and back to today’s interview!

Chin: Cindy offers great detail about her father Jerry's early onset dementia, and Bruce it's fascinating how you can define the disease based on these observations. I want you to tell me your perspective on this disease, which is at once completely unpredictable and people's experiences with it are so unique yet you can definitively or almost definitively say so much about it based on Cindy's memory of her father's behaviors.

Miller: Yes, I think when I trained in dementia I did a fellowship at UCLA between 1983 and 85. I went there specifically to work with Frank Benson and Jeff Cummings. They were among the few people in this wilderness at that time who believed that you could diagnose different degenerative diseases at the bedside before autopsy. It's all about stories and the stories of relative weaknesses, strengths, what are the psychiatric symptoms that the person suffers from. This just gives massive insight into ultimately the underlying molecule responsible for the illness, but if you don't take a careful story thinking about who that person was before the illness started and dive deeply into what's happened – without that careful empathic story, I think diagnosis is fraught with error.

Chin: And it seems to me that having experience is really important but being a really active listener is equally as important so that you can hear those details as you're analyzing and putting a picture together in your own head.

Miller: I think that's so true. Open listening, you know, without a priori assumptions about what that story is. I think you're so right, it's all about empathy.

Chin: How does early onset Alzheimer's disease progress differently than the more common late-onset Alzheimer's disease?

Miller: Yeah, we think they're two major subtypes clinically. They look very similar pathologically. There's amyloid and tau, but there's one that is fairly much like what we see in elders which is memory predominant syndrome, forgetting. Eventually people get other difficulties, but the amnesia is most prominent. The other type is more atypical; it can begin on the left side with problems with word finding. We call this a logopenic variant of Alzheimer's disease. It can start very posteriorly in the brain with trouble seeing things in the environment, difficulty navigating, and this is called posterior cortical atrophy which was defined by my teacher, Frank Benson. Sometimes it can begin in the executive parts of the brain, so people have lots of trouble with multitasking. The interesting thing is many of the people with memory problems carry the gene apoE4, and many of the people that do not start with memory do not carry apoE4, and for me are very mysterious. Why are they getting Alzheimer's? We don't really have much of a clue.

Chin: So, Bruce, you write about a future where biomarkers could replace a clinical diagnosis. Essentially someone would undergo a test and that result would come back and tell them what kind of dementia they have. You still have to diagnose dementia or MCI, so I don't believe a blood biomarker could do that, but perhaps a digital one may in the future. Does this future with biomarkers mean physicians will lose that face-to-face time with patients and families where we hear the stories about symptoms and behaviors? Will physicians lose those intimate conversations with their patients and families that help build trust and help both sides better understand each other?

Miller: What a thoughtful and thought-provoking question. I think, in medicine, we're constantly asked to speed up and cut costs and some of the healing things that many of us like to do in our clinics, even in the diagnostic process, are cut short. I think these discoveries tend to make our work more complex rather than simple. So I think the biomarkers tell us something about what molecules are in the brain, but they may not tell us very much about what the clinical problems are. What are the dilemmas facing the family? What is this individual having difficulty with? So I think if care was really good, the answer is no. I think it will require more time and more thinking at the bedside. I think that our group has really had the mantra – great care is cost effective. I think that's really the truth.

Chin: It reminds me of my internal medicine residency training which is in California where they said to me – tests are going to come and go. There's always going to be something new and exciting. And you will learn it at that time but you will always need to know how to collect a history, how to reach someone, how to talk to someone, and how to get that information out to someone who's going through their own struggle. I feel like this is really applying now to this field where biomarkers are very exciting. They can talk a lot about what's happening in a living brain, but like you just said they can't really tell me what a person's experiencing and, therefore, the care that is needed for them.

Miller: Yeah I love that training. Not everyone gets it so I think you're lucky to have had teachers talk that way.

Chin: Cindy observed a few of her father's characteristics that could be considered risk factors for Alzheimer's disease. Cindy said she remembers her dad never slept well, that her father wasn't a reader, and even speculated that her paternal grandfather may have had dementia. Cindy, knowing what you have learned from the fellowship,what do you think are the key risk factors people in the community should know about and reflect on in their own health?

Weinstein: I think having trouble sleeping is a risk factor. I don't know the science enough to know if it's cause or effect. So I think if your loved one is having sleep issues, going to a sleep study is a good idea. My father had hearing difficulties decades before the diagnosis. I tell the story of my mother taking my father to a hearing doctor who was really quite misogynistic. When finding that there was nothing technically wrong with my father and then asking my mother how long they had been married, my mother replied decades. The doctor said, “Well he just doesn't want to listen to you anymore.” And if a doctor says that kind of thing to you, go to another doctor and really dig into what's happening with the hearing. If you have hearing trouble you, I think, are more isolated, and we know isolation is a risk factor for dementia. One of the most interesting things that I remember from the fellowship – Bruce gave a talk on Parkinson's, and he talked about depression. He said in Parkinson's disease, he often found a ferocious depression on the part of people with Parkinson's and then he speculated that depression may not necessarily be an effect of the disease but a sign of it. And so I think if your loved one is depressed or exhibiting unusual moods that that's something to look into very seriously.

Chin: Bruce, what are the big advancements in the science of Alzheimer's disease risk since the 1980s?

Miller: Yeah, I think it's been turned upside down. The Lancet commission study in 2020 listed 12 reversible risk factors that they thought accounted for approximately 30% of all dementia. I think it was, you know, required to hold my breath for a second when I started to hear about this. I think the more we learn about this the more we understand the basic biology. With sleep, for example, there's been lots of anecdotal data that not sleeping well may increase your risk for Alzheimer's disease. We now know from the great work at Washington University by Dave Holtman and Randy Bateman and others that we have our own system in the brain that's activated in deep sleep for getting rid of amyloid and tau. So the biology merges with epidemiology in a very powerful way. And I think you, at the University Of Wisconsin, have really been leading these efforts in familial dementias and thinking about the intersection between genes and environment. The environment's important. I think we keep adding to that list of 12 – clearly now loneliness, isolation socially is likely to accelerate your dementia and may even be a risk factor for it. I think one of the big studies is suggesting that air pollution is also going to be an increasingly important factor and a risk.

Chin: Cindy describes certain behaviors her father exhibited throughout his disease. Her mother told her that her father pulled the sink off the wall in a nursing home, and Cindy also wrote about the sound of her father's dementia. Later in that chapter, Bruce, you wrote that there is still so much we don't know about this disease, that we don't know if sadness, irritability, agitation, bruxism are behaviors that manifest because of the disease or in reaction to it. Where is the research on this connection between behaviors and Alzheimer's?

Miller: I think it's understudied. I think it's a great question. We spend billions of dollars every year developing drugs to prevent the accumulation of amyloid in the brain but we spend very little thinking about how to treat behaviors in Alzheimer's disease. I'm sure they have a chemistry that is malleable but we have ignored the neuropsychiatry of Alzheimer's disease. And I think this is really unfortunate, not only for our patients but also for other psychiatric diseases where these manifestations like anxiety are very prominent and disabling.

Chin: There's a section in your book that I just loved where Cindy really opens her heart and says, you know, I had this powerful moment with my father – I think it was later in the disease –  and did he know it was me? Did he experience love because it was me? And she goes through this dissonance, this kind of painful reliving of it. Then, Bruce, you write a response in the book kind of from a neurological scientific perspective on love and the feelings of love later in the disease. Can you just summarize for our listeners your perspective on that?

Miller: Yeah, well I think that with the tragedies, there are also quite beautiful stories of people and some of them are starting to be told. Sometimes early in the course of Alzheimer's disease, people begin to really become more sensitive. I think it's really because certain circuits in the brain are turning on but for some people this is the first time that they really get close with their loved one whether it's a mother, a father, spouse, brother, or sister. And I think they're just really beautiful love stories. I mean the caretaking is part of the love journey for some couples who, like Cindy's parents, were together for decades and decades and you know the love that her mom expressed for her dad in this illness and I'm sure the way he experienced it was quite beautiful.

Chin: Thank you for sharing that because I think that's a needed perspective or a needed voice in this discussion where we frequently talk about loss and disappearance, but there is something still beautiful that can be seen if we look for it.

Miller: I've seen it many times sadly – and it reflects our lack of cures – but I've seen many funerals of my patients and people with dementia and, you know, hired caretakers come together. The family comes together. It's almost always incredibly moving. The way the caretakers have touched the lives of the patient and the family and how the family has been changed. One of the stories in Cindy's book that really moved me in a very sad way was hearing that her dad's friend sort of disappeared when he started to get sick. It's sad for Jerry Weinstein but even more sad for these people who miss the opportunity to give love to a friend.

Chin: And Cindy, your bio page on The Atlantic Fellowship website includes your vision for the development of a caregiving system that treats people living with dementia with kindness and respect and supports the people who then love them. What do we have to do as a society to get to what you envision?

Weinstein: I think the most important thing is to break down the stigma because stigma is a silencer. If you don't talk about this disease and its effects on caregivers and loved ones and friends and community more broadly, you can't get to the kind of empathic caregiving world that I would hope that we can get to at some point. So I think telling these stories is necessary but not sufficient. The sufficient part comes with money but the first step is telling the stories.

Chin: Well and Cindy, thank you for telling your story in this book, Finding the Right Words: A Story of Literature, Grief, and the Brain. We will have the link on our website so that people can find this book. And I very much appreciate you coming on our show and talking about this. Certainly you have already had an impact on those that have already read it, so thank you.

Weinstein: Thank you Nate. I really appreciate it. Thank you.

Miller: Really well done, Nate. Thank you.

Outro: Thanks for listening to Dementia Matters. Be sure to follow us on Apple Podcasts, Spotify, Google Podcasts, or wherever you get your podcasts to be notified about upcoming episodes. You can also listen to our show by asking your smart speaker to play the Dementia Matters podcast. And please rate us on your favorite podcast app -- it helps other people find our show and lets us know how we are doing. Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center. The Wisconsin Alzheimer's Disease Research Center combines academic, clinical, and research expertise from the University of Wisconsin School of Medicine and Public Health and the Geriatric Research Education and Clinical Center of the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. It receives funding from private university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers. This episode of Dementia Matters was produced by Rebecca Wasieleski and edited by Caoilfhinn Rauwerdink. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. To learn more about the Wisconsin Alzheimer's Disease Research Center and Dementia Matters, check out our website at adrc.wisc.edu. You can also follow our Facebook page at Wisconsin Alzheimer’s Disease Research Center and our Twitter @wisconsinadrc. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.