Valley of Forgetting: Alzheimer's Families and the Search for a Cure

by Jennie Erin Smith

The riveting account of a community from the remote mountains of Colombia whose rare and fatal genetic mutation is unlocking the secrets of Alzheimer’s disease

In the 1980s, a neurologist named Francisco Lopera traveled on horseback into the mountains seeking families with symptoms of dementia. For centuries, residents of certain villages near Medellín had suffered memory loss as they reached middle age, going on to die in their fifties. Lopera discovered that a unique genetic mutation was causing their rare hereditary form of early onset Alzheimer’s disease. Over the next forty years of working with the “paisa mutation” kindred, he went on to build a world-class research program in a region beset by violence and poverty.

In Valley of Forgetting, Jennie Erin Smith brings readers into the clinic, the laboratories, and the Medellín trial center where Lopera’s patients receive an experimental drug to see if Alzheimer’s can be averted. She chronicles the lives of people who care for sick parents, spouses, and siblings, all while struggling to keep their own dreams afloat. These Colombian families have donated hundreds of their loved ones’ brains to science and subjected themselves to invasive testing to help uncover how Alzheimer’s develops and whether it can be stopped. Findings from this unprecedented effort could hold the key to understanding and treating the disease, though it is unclear what, if anything, the families will receive in return.

Smith’s immersive storytelling brings this complex drama to life, inviting readers on a scientific journey that is as deeply moving as it is engrossing.

Genres: Science, Nonfiction, Medical, Health, Medicine, History, Audiobook

383 pages, Kindle Edition

First published April 1, 2025

About the author

I am a reporter, writer and reviewer specializing in science and natural history, with a longtime interest in zoos, museums, animals and conservation. For several years I worked as an environmental reporter in Florida, where I developed many of the contacts needed to write Stolen World; currently I live in Europe, where I write for the Times Literary Supplement and other publications. I am always happy to talk about my work, so please don’t hesitate to contact me if you have questions, or feedback, or would like to schedule a Skype video chat for a book club or class.

Reviews

[Rachel Calvis · Rating 5 out of 5]

Thank you Riverhead Books for the ARC of this book, as it has been my favorite book of 2025 so far.

From the in-depth research to the individual stories within the story, I grew fond of the people whose stories were highlighted, as well as gained an insight into Alzheimer’s research that I would have never known beforehand.

The writing was detailed, yet clear, and I found myself not being able to put the book down. That, to me, makes a great book, and I highly recommend to anyone wondering if they should read this masterpiece.

[sara · Rating 4 out of 5]

i feel immensely lucky to be learning about alzheimer's from this book instead of experiencing it firsthand with my own family. i knew just the surface level facts but after reading this book i've realized i knew little to nothing to begin with! the author does such a great job at explaining the science of alzheimer's while also humanizing the families that were studied, this didn't feel like a book devoid of any empathy but instead gave life to those who live and struggle with alzheimer's. if you aren't familiar with nonfiction that's heavier on science/research but still want to learn more i can't recommend this one enough!

thank you so much to riverhead for sending an ARC my way! <3

[Amerie]

This sounds so intriguing. Very much looking forward to reading this.

[Hannah · Rating 4 out of 5]

" i mentioned to him what Lopera once told me - that a medico rural had been stationed back then in Agnasturo, the town closest to Canoas, but he had failed to notice anything amiss in the hamlets. Lopera has relayed this with dismayed amusement but Piedrahita said he was not surprised. people went to the doctor only when they had a machete wound to be seen or their appendix was going to burst, when they had unbearable pain.
"and Alzheimers doesn't hurt" he said

well, i have a lot of thoughts about this one. while written about a cluster of families with the E280A gene in Colombia and the genetic trail that falls through generations, i can't help but think of this as a warning. we are constantly being warned (and seeing) the rising rates of dementia in the elderly, and while this book is about the genetic testing and trial drugs, it's also about how families cope when one gets sick after another. how are we to care for eachother when the day comes when the warning comes true when we barely have a handle on today? yes, Colombia is a different world, different life, but alzheimers remains the same, caregiver burnout still burns through out families, fears of passing down your confusion still keeps people up at night.

Jennie may not have written this book as a warning, and my interpretation could be born out of my work and life around me, but regardless, she has written a wonderful book about families willing to do anything for each other, including put their faith in science.

[Daniel Cadena · Rating 5 out of 5]

I loved this book. It hit close to home—my dad is currently battling Alzheimer’s, and the disease also runs in my mom’s family. While it’s not early onset in our case, the emotional weight is very real.

What struck me most were the deeply human stories of the families—so moving and familiar. I found myself reflecting on my own experience throughout. The author’s effort to truly understand these families and their lives was incredibly powerful.

As a scientist, I also appreciated how the book explored the dynamics between Colombian researchers, their international collaborators, and Colombians working abroad. The reflections at the end—questioning whether all this research has genuinely helped patients and families, or whether it’s primarily advanced scientific careers—really resonated with me. It’s a tough but important question.

[Susanne Latour · Rating 3 out of 5]

This is an important story tell shine a light on but the writing was too dry for me. I wished the author spent more focus on talking with individuals/families.

[Lauren · Rating 3 out of 5]

The first third of the book was a little confusing, but the last 2/3rds of the book made up for it. Helped with understanding current Alzheimer’s treatments, but did leave me with some sadness.

[Anne · Rating 5 out of 5]

fascinating look at the slow march to conquer a dread disease

There are so many fascinating aspects of this book that are not often considered. Although it did not end with the holy grail discovered — the cure for Alzheimer’s — readers won’t soon forget the people who are part of a painstaking process whose doom by an accident of genetics may be part of solving the mystery of this terrible disease.

[Serena Agarwal · Rating 4 out of 5]

Unbelievable story, SO so sad.

[Sherry Ragan · Rating 5 out of 5]

intimate portrayal of research participants

A beautiful and very sad story of hope for the future. The author follows the very sad path of poor families of Columbia inflicted with the gene for early onset Alzheimer’s and those who try to help them. Hopefully someday these families will reap the benefits of their sacrifices in participating in ongoing research.

[Pam Coon · Rating 4 out of 5]

Alzheimers is a terrible disease, afflicting many of our population. This tells the story of the search for the cause, which could lead to a cure, or at best, a cease-fire on the progress of the disease. Researchers go to the remote mountains of Columbia to study a large segment of that population who share a fatal genetic mutation that causes early onset Alzheimers. They hope to unlock the secrets of this devastating disease. The researchers manage to convince the population (riveted by the way with the presence of dangerous drug cartels) to participate in the study which will mean they agree to be tested for the gene (which if present predicts almost certainty that they will develop Alzheimers as early as their late 30's), be willing to take experimental drugs, and donate their brains after death for the study. The researchers absolutely would not share the results of the genetic testing (which was acceptable to most because they didn't want to know), but for a few who had cared for their terribly disabled relatives, some did want to know so that they could plan for their futures and especially decide if they would want to have children.
The study was led in the 1980's by Dr. Francisco Lopers, who worked on this quest for 40 years and who is responsible for discovering the gene. Through his efforts, a world-class research program rose in a region filled with violence and poverty. He was soon joined by a doctor from the USA. This is the story of sacrifice and a quest toward a cure, but for the time being this population, so wanting to find this cure, is left without much of anything.

[Julia Dietz · Rating 5 out of 5]

this book is a heartbreaker. anyone who has loved or cared for a loved one with dementia or alzheimer’s will feel very seen when they read this. told from the perspectives of researchers looking to find a cause and, potentially, a cure to this wretched disease by studying large familiar groups of sufferers. the family members watch their siblings, aunts, uncles, parents, cousins waste away to this wretched disease and wonder if they will share the same fate. as science, and life, progress we see researchers’ and families’ attitudes evolve. importantly, we can see firsthand the exploitation of a vulnerable population for research, but little reward. it’s gutting, it’s dork, it’s flawed, and it’s deeply human.

[Emma Howard · Rating 4 out of 5]

Such a unique view on Alzheimer’s disease and families that are affected by it. These book centers around a region in Colombia who have some of the highest rates of Alzheimer’s disease who participate in a medical study in an attempt to identify an effective medication to treat Alzheimer’s. While the researchers displayed empathy to the families, I do think they deserve SO much more for their extended participation in these medical studies. These families live with limited resources and showed up for the studies for years and I truly believe they should have been given more for their priceless participation. Overall, I really enjoyed learning more about Alzheimer’s especially with the focus on these families.

[Heather Ryniker · Rating 5 out of 5]

This book took a very complicated medical condition with long medical words attached and made it interesting and understandable. The author is a true storyteller and reminds us to think about this disease as a both a global problem but also a very local one with people who have the same hopes and dreams as any of us even though they are living without the same conveniences as many of us. Getting to know the families through Jennie’s eyes was both heartbreaking AND helpful to remind me that I’m not the only one living with uncertainty about life.

[Michael · Rating 5 out of 5]

Valley of Forgetting by Jennie Erin Smith is a terrific example of narrative journalism at its finest. Movingly without being maudlin and never straying from the science of medicine, Smith weaves a story of Alzheimer’s toll on a line of Colombian people that is unflinching and empathetic. It’s an engrossing read.

[Adriana Stringer · Rating 5 out of 5]

Amazing. I read most of this and then finished the last 5 chapters as an audiobook. Both were excellent. The author does an amazing job of humanizing the families so that when you realize how unethical the pharmaceutical companies and researchers are you are indignant for them. I wish I could follow up on these families and people I have come to care so much about.

[Courtney Martin · Rating 4 out of 5]

This is a powerful, thoroughly reported book that I deeply admire. As a journalist myself, I can see what a massive amount of work went into reporting and writing it. And as a daughter of someone with advanced Alzheimer’s, I found it even more impactful. It really reminded me of some of my other favorite global health narrative books like Mountains Beyond Mountains.

[Sophia Englehart · Rating 5 out of 5]

10/10, such a tough read but the research and storytelling was impressive. When it comes to literatures consumption, it’s so easy to read the things that allow you to escape and forget the hardships. It’s healthy even! But so is educating yourself…and this is a subject where the need for understanding had becoming more pressing for me and my family 💜

[Kendall · Rating 5 out of 5]

Excellent book, especially if you’re interested in Alzheimer’s and Research.

[Em (Makenna) · Rating 4 out of 5]

Really interesting and I liked the writing style

[Dave · Rating 4 out of 5]

Enjoyed this a lot! Learned a lot !

[Toddy · Rating 3 out of 5]

Good, really interesting history of discovery of Alzheimer’s genetic markers. Could not finish it because I was getting hypochondriac about forgetting.

[Melissa · Rating 5 out of 5]

𝑽𝑨𝑳𝑳𝑬𝒀 𝑶𝑭 𝑭𝑶𝑹𝑮𝑬𝑻𝑻𝑰𝑵𝑮 𝒃𝒚 𝑱𝒆𝒏𝒏𝒚 𝑬𝒓𝒊𝒏 𝑺𝒎𝒊𝒕𝒉 has been a fascinating, moving, and informative look into Alzheimer's and one community in Columbia where research and hope combine; out April 1st and #gifted to me by @riverheadbooks #riverherd & @prhaudio.

This book has taught me so much about some of the research that has gone into this horrible disease, not least of which is the impact of research on participants of trial drugs.

A few points of interest:
~ I didn't know, but it seems obvious, how diseases that are identified from mutations in genes can be traced back hundreds of years.
~ pharmaceutical companies don't pay for a majority of research - the governments do through grants. This was infuriating to me for many reasons.
~ Again probably obvious, I learned that research is often done on poor populations that have little chance of actually receiving drugs that work when discovered using their bodies. This is worldwide.
~ There are multiple level of ethical dilemmas when testing for fatal diseases. I have a new level of respect for those who have subjected themselves to tests as well as a lack of transparency for these layered reasons.
~ Not surprising, there are heavy prices to pay for tests that don't show effectiveness, thus prompting the leaders of tests to downplay those results in order to keep funding. This felt extra heartbreaking.

There are more. I am grateful to the author to compile such an account filled with scientific studies (a little harder to stay fully in my grasp) balanced with the personal stories of those entrenched in the research as subjects and researchers. The personal aspects kept this accessible, enabling me to chew on the science a bit more easily. Having the added audio was another help in processing the science in a more fluid way.

I definitely recommend this book for anyone looking to deepen their understanding of the deeper costs of our medical treatments.

[MCZ Reads · Rating 4 out of 5]

Thank you to Riverhead and Penguin Random House for an ARC of this book!

Valley of Forgetting was a heavy read for me--dementia runs in my family, and my grandma passed away from it last year. What stood out the most to me was the author's compassion for the families at the heart of the Columbian study described in this book. There's a reason the families are named before the cure in the title: because the book is really about them and their stories.

There are many people named in this book, from lead doctors and participants the author spent the most time with, to people who appear in only one or two chapters. I appreciated that the author gave details about each person's appearance, background, or some other unique identifiers to make names stand out. These details also humanized everyone and gave them an identity removed from their job or their connection to the disease.

On the medical side, I felt like there was enough detail that a layperson could follow the subject without feeling overwhelmed or confused. I learned more about dementia and Alzheimer's, and about theories about the possible causes or contributing factors. There was enough information to distinguish the different treatments and medicines and how they differed. But there wasn't a deep dive into the science of the treatments or medicine. I thought the more interesting information was the behind-the-scenes politics of medical studies.

[Richard McColl · Rating 5 out of 5]

How much do you know about the tragic disease that is early onset Alzheimer's? Well, read Erin Jennie Smith's seminal work - researched and written, boots on the ground, in Colombia for over six years - and learn a great deal more.

You may have read some of Smith's articles in the NYTimes as she is a regular contributor, but Valley of Forgetting is an intensely personal account of Smith's experiences in this world of science, academic rigour, human life and loss, familial complexities and then blend in the elements of Colombia's challenges.

How did Colombia's lead scientists even manage to travel to isolated regions near to the city of Medellin to conduct essential research into Alzheimer's, braving threats of kidnapping, left wing guerrilla and right wing paramilitary violence and more. This was a different Colombia back then.

And, how did they manage to investigate up to 6000 members of one family tree all potentially suffering from the disease, pursuing lines back to the 17th century, with a pitifully small budget?

More than a book just tracing an awful disease, this is a human look at how families survive and evolve, how Colombia can be a location for in-depth and ground-breaking scientific research and medical discoveries.

Highly recommended.

[Derek Catron · Rating 5 out of 5]

Jennie Erin Smith’s “Valley of Forgetting: Alzheimer’s Families and the Search for a Cure” is an important book that combines vivid storytelling with heartfelt characterizations to provide a deep (but accessible) understanding of a difficult topic. The book focuses on research of a rare genetic mutation found in extended families in rural Colombia, where many develop Alzheimer’s symptoms as early as their 30s and 40s. Smith moved to the country in 2017, providing readers an intimate perspective on the challenges faced both by doctors and researchers (an unflinching but respectful description of a brain dissection is but one example of her extraordinary access) as well as families fighting a cruel fate, caring for loved ones the disease has claimed even as they live under the shadow of wondering when their turn may come. The shifting perspectives maintain empathy for all sides through the profound ethical dilemmas the study raises. Should those participating in the study be told if they carry the mutation? What does science owe to communities that contribute to groundbreaking research but may never benefit from the treatments that eventually come from it?

[kylie · Rating 5 out of 5]

Alzheimer's (or any form of dementia) is one of my top fears. A very human fear, for what are we known for if not our large brains capable of cool things like art, science, and creating fake languages for entertainment with all of the bits and pieces a real one would require.

Anyway, this book is both heart wrenching and incredibly touching. Over the course of a several year clinical trial, we follow a particular grouping of Colombian families that are known to get early-onset Alzheimer's at a seemingly very high rate. Any given generation has multiple family members gone too soon after early-onset symptoms. Despite knowing that there's a good chance they each may develop the disease, the younger family members choose to live their lives fully and without (much) fear, caring for their relatives when needed and donating their brains when they're not [needed].

**I received my copy from Netgalley.

[shraddha · Rating 5 out of 5]

this book is so lovingly written. what an act of service it is to tell the story of a disease and it's mechanisms without forgetting the people who suffer for it, who study it, and those who benefit from it. it certainly draws parallels to Henrietta Lacks, and while those problems are nowhere near solved, this story gave me hope that we're moving towards a better world for the study of life-ruining disease

[Susan Keller · Rating 5 out of 5]

An excellent book about the search for help and cures for Alzheimers. A fascinating account of a Columbian tight knit group of families that have been important in Alzheimer's research. A scientific book written with concern for the involved families and in a understanable way for the general public. Highly recommended

[Jodie Siu · Rating 5 out of 5]

Beautifully written narrative non-fiction examining the lives and scientific inquiry surrounding a huge web of interlinked families in Colombia, huge numbers of whom are struck by early-onset Alzheimer's. Educational but never dense or boring, the strength of this book lies in the care and honesty with which Smith describes the families, their challenges, and their resilience.