The Inheritance: A Family on the Front Lines of the Battle Against Alzheimer's Disease

by Niki Kapsambelis

An inspiring race against The courageous, hopeful story of the one family who may hold the key to finding a cure for Alzheimer’s disease.

Every sixty-nine seconds, someone is diagnosed with Alzheimer’s disease. Of the top ten killers, it is the only disease for which there is no cure or treatment. For most people, there is nothing that they can do to fight back. But one family is doing all they can.

The DeMoe family has the most devastating form of the disease that there early onset Alzheimer’s, an inherited genetic mutation that causes the disease in 100 percent of cases, and has a 50 percent chance of being passed onto the next generation. Of the six DeMoe children whose father had it, five have inherited the gene; the sixth, Karla, has inherited responsibility for all of them. But rather than give up in the face of such news, the DeMoes have agreed to spend their precious, abbreviated years as part of a worldwide study that could utterly change the landscape of Alzheimer’s research and offers the brightest hope for future treatments—and possibly a cure.

Drawing from several years of in-depth research with this charming and upbeat family, journalist Niki Kapsambelis tells the story of Alzheimer’s through the humanizing lens of these ordinary people made extraordinary by both their terrible circumstances and their bravery. Their tale is intertwined with the dramatic narrative history of the disease, the cutting-edge research that brings us ever closer to a possible cure, and the accounts of the extraordinary doctors spearheading these groundbreaking studies. From the oil fields of North Dakota to the jungles of Colombia, this incredible narrative redefines courage in the face of one of the most pervasive and mysterious pandemics of our time.

Genres: Nonfiction, Science, Medical, Psychology, Audiobook, Memoir, Health

368 pages, Hardcover

Published March 7, 2017

Reviews

[Cheri · Rating 4 out of 5]

Roughly fifty percent of this book is devoted to the story of one family’s struggles with early-onset Alzheimer’s, some of the details each individual encounters with the disease, how it progresses, and the toll it takes on other family members. The remaining percentage is devoted to the progress of the study of what we now call Alzheimer’s, from the identification of the disease in 1906 by Alois Alzheimer, a German psychiatrist. However, there are references in literature dating further back, to the second century, referred to by the Roman emperor Marcus Aurelius’s physician as “morosis,” writing “some in whom the knowledge of letters and other arts are totally obliterated; indeed they can’t even remember their own names.”

Sixty to eighty percent of all dementia cases are caused by Alzheimer’s disease. The remaining causes include Parkinson’s disease and Huntington’s, among others. Out of those with Alzheimer’s disease, only one percent fall into the category of the early-onset variation, which plague the DeMoe family, with the average age of onset being between thirty to fifty years old. With each child of a parent with early-onset Alzheimer’s disease having a 50/50 chance of inheriting the disease. In the DeMoe family, the percentage was higher.

This book’s primary focus is the studies of the DeMoe family, beginning in the late 1940s when sixteen year-old Galen DeMoe became the focus of twelve year-old Gail Helming’s dreams for the future. Galen and Gail. Love at first sight – the way only a young girl living in a place like the outskirts of Eau Claire, Wisconsin could see where her future belonged. When they were old enough to marry, their children came along as often happens, six children who grew up, sometimes married, adding more to the line as their children were born.

This book includes an overview of some of the past and existing research, but the research is presented in a very easy-to-understand way. It also doesn’t tend to dwell on the research, per se, but is often a personal touch of the doctors involved, their own bravery involved in so much of the research. The research it isn’t solely about early-onset Alzheimer’s. There is much about the research that applies or could apply to other forms of dementia.

Most of all, Niki Kapsambelis shares this story of amazing courage and dedication through the story, stories, of this one family through multiple generations, the havoc this disease caused, how it shaped their lives, and yet how devoted they remain to the eradication of this epidemic.


Pub Date: 14 Mar 2017

Many thanks for the ARC provided by Simon & Schuster

[Tyler · Rating 5 out of 5]

Speechless. What a magnificent book that delves deep into the science behind Alzheimer's disease and the search for a cure, and delves even deeper into the story of the incredible DeMoe family. I would highly recommend this book, especially if you have ever witnessed firsthand the devastating impact of Alzheimer's disease.

[David · Rating 5 out of 5]

For me – for many people – few things are as frightening as the loss of self that Alzheimer’s inflicts on its victims. Writing with clarity, compassion, and insight, Kapsambelis brings us into the DeMoe family, cursed with early-onset Alzheimer’s, and shows us the damage wrought by the disease, the burden it places on everyone in its orbit, and the courage and strength of the family to give whatever they can to the greater fight against the disease. This powerful book also spells out the history of science’s understanding of the disease, the determined (and seemingly ever more hopeful) efforts of a handful of researchers to find a cure, and how the DeMoes’ have helped advance their efforts. That said, the book is no hagiography – we see the family’s flaws, their idiosyncrasies, and their fears and hesitations too – but, by showing us their humanity, the author helps us feel their hardships and their hopes more deeply.

By the end, I had to fight back tears over the accumulated losses the DeMoes (and others) had suffered, but I was heartened by how far the science of this disease has come, and how important that progress is. Perhaps the author’s greatest achievement is making the reader understand, on a visceral level, the human, financial, and societal toll that this disease will take on our society if no cure is found.

Recommended without reservation.

[Mary · Rating 4 out of 5]

Who isn't freaked out by the idea of having Alzheimer's disease? My grandmother and two aunts have passed away as the result of this sneaky killer. So to face my fears, I read this book. Knowledge is power. And sometimes scary too.

Alzheimer's is the 6th leading cause of death in the US including deaths from accidents. No cure. This book follows the DeMoe family of North Dakota who unfortunately have a rare dominant gene for early onset Alzheimer's. 5 of 6 adults in this family have the disease and have a 50/50 chance of passing this gene on to children.

The DeMoe family have unselfishly participated in many research studies that have allowed scientists to learn a lot how this disease works. In Alzheimer's, plaques start to accumulate in your brain well before you notice any symptoms. The plaques then form into tangles that effect thought processing and memory. Eventually you forget how to eat and swallow.

They are hoping to develop an effective treatment, vaccine, or cure by 2025.

[Lisa · Rating 5 out of 5]

"The Inheritance is the story of the DeMoe family, plagued by familial, early onset Alzheimer's disease. It is a story of heroes making extraordinary contributions to scientific research, of crusaders driven to change the course of this disease for the sake of their children, the next generation, all of us. I felt honored to read this important book, bearing witness to a historic moment in the quest to cure Alzheimer's."—Lisa Genova

[Elizabeth Stolar · Rating 4 out of 5]

6/7. Another fascinating and heartbreaking read. This was such an interesting look at early-onset genetically inherited Alzheimer's, focusing mostly one one family. I've always imagined that it was bad enough for an adult to watch a parent, who had always been strong to lose themselves to Alzheimer's, yet many of these victims have children -- sometimes very young children who never get to really know the parent at all. This book follows one family where the father (and his mother and siblings) had early-onset Alzheimer's and then not that long afterward, the children started succumbing as well. The family barely has time to recover from the father's experience when the oldest child is stricken and eventually 5 out of 6 children are taken, with their mother watching this happen.

The scientific portions were interesting, as well. My one quibble is that sometimes the writing wasn't as good as it should be, with some awkward sentences, some pronoun usage where it wasn't clear to whom it was referring, and some repetition. All of this should have been caught in the editing process. But, the story is otherwise so strong and so interesting that I can overlook it.

If you enjoyed Still Alice (which is a very realistic novel), I think you'd like this.

[Marika · Rating 2 out of 5]

This book is a mixture of science and narrative non-fiction. Chapters alternate between the research that was conducted (and continues on) to find the cause/cure of Alzheimer's and that of the DeMoe family. The DeMoe family was selected to study as they had the most devastating form of the disease that there is: early onset Alzheimer’s, an inherited genetic mutation that causes the disease in 100 percent of cases, and has a 50 percent chance of being passed onto the next generation. The chapters that deal with the research is written in technical language that is the hallmark of scientific research but is easily skimmed over.

Note: I received a free review copy of this book and was not compensated for it

[Chris Loveless · Rating 4 out of 5]

Book about the history of Alzheimer’s. At the time of publication, it’s the number 6 killer in the US. Well researched. Book shares stories of 3 families who have been ravaged by Alzheimer’s. In a number of instances these folks decided to have their brains donated to science for us to study their brains. Some instances of the disease being inherited by 3 generations of folks or by 75% of family impacted. Awful. Author shares stories of family members deciding on whether to get tested and whether to have kids knowing the chances of their offspring inheriting the disease. Author also details how the brain and bodies of those are impacted. Must be so hard to watch your family gradually regress and begin forgetting basic things and then not being able to recognize your family.

[Cherie · Rating 4 out of 5]

Science text conveyed in such a poetic, beautiful way. Absolutely loved this book. Gave me so much to think about and truly touched the heart. A daring and successful way to bring out the important work that researchers and families stricken with the disease is doing behind the scenes for the future of humanity.

[Tracy · Rating 5 out of 5]

This book tells the story of the DeMoe family and their battle with Alzheimer's and also tells the story of the battle against Alzheimer's by researchers and doctors. There still is no cure for Alzheimer's, but it isn't because there aren't caring doctors and researchers out there. This is an informative read and one that anyone who is touched by Alzheimer's should read.

[Tfalcone · Rating 4 out of 5]

Thank you Net Galley for the free advanced reading copy.

Fascinating account of one family's tragic inheritance of the early onset Alzheimer's gene which is an autosomal dominant. Five kids in the family of six have the gene and know it, the youngest has to be the one to make all the decisions about their care.

Also incredible that in the last fifty years our understanding of this disorder really has not really advanced . It is now the sixth most common cause of death in the US and we have nothing to fight it. I remember doing a research paper on this in the 90's and I feel it's the same information - plaques and tangles.

What I did find super interesting was the fact that many Down syndrome children will eventually get early onset Alzheimer's ( because of their reduced lifespan) and the relationship of the disease to chromosome 21 app gene. However, while almost all Down patients have the plaques and tangles, not all develop Alzheimer's.

Another interesting bit is the work of Dr. Lopera in Columbia with the paisa. I saw this story on 60 Minutes and it was quite remarkable and is currently one of the biggest drug trial against the disease.

[Ajith Kunnath · Rating 5 out of 5]

The easiest reference that I can offer you for my latest read "The Inheritance" by Niki Kapsambelis is Robert Kolker's "Hidden Valley Road". For the uninitiated, the latter is about schizophrenia and how it ravaged the Galvin Family, while "The Inheritance" is about the DeMoes family in the throes of Alzheimer's, if we were to simplistically draw parallels between the two.

Now there is no denying the fact that "HVR" is a wonderful read that warranted it's wider acclaim,however, my unashamedly using it as a reference here is by far the most unfair way to introduce you to Niki's brilliant work because "The Inheritance" was published in 2017, a full 3 years before Mr.Kolker's 2020 work.On top of that, turning a blind eye on the details Niki put together,a notch better than what HVR has managed to, is a grave injustice.

Extensively researched, the book is partly about the DeMoes family from North Dakota whose generations have been afflicted by Alzheimer's, while the other parts are about and not limited to -

* the findings made over the course of more than a century (among many others the discoveries of Alzheimer's gene variants, correlation between Alzheimer's and down syndrome)

* the contributions of the many medical practitioners and scientists.

* the different schools of thought (Baptists v/s Tauists.Baptists are the proponents of Amyloid protein as the potential root cause of Alzheimer's as they believe amyloid causes the plaques that develops into cognitive degeneration V/S Tauists who theorizes that Tau proteins develops into tangles that make the brain cells useless).

* the attempts/medicines made to put brakes on this disease and the challenges encountered.

The DeMoes, the Noonans and the 'paisa' from the interior Columbia, have been treading through - emotional and terror stricken as if they are blindfolded on a mine infested field - not knowing what lay in store for them on their next step, are representatives of a much wider and broader group - an estimated 24 to 36 million Alzheimer's patients worldwide as per a 2015 report.

Despite being such an amazing book, a google search or even the Goodreads profile of "The Inheritance" tells us a different story,that the book hasn't received it's due that it rightfully deserves.

[William Schram · Rating 5 out of 5]

Alzheimer's Disease is one of the worst things that I can think of happening to a person. At least with a heart attack or in some cases with a stroke, you are still capable of remembering who you are. Alzheimer's is an atrocious illness, afflicting both the patient and the caretaker as the caretaker is prone to be the target of patient's mood swings and day to day problems. While it was first systematically named and categorized in 1906 by Alois Alzheimer, this condition has been around for millennia.

This book is the story of one family's quest to find answers. It focuses on one particular family and how they dealt with the hand they received in life. At its core, Alzheimer's Disease is characterized by the build-up of beta-amyloid proteins and tau protein tangles that choke brain cells to death. This book covers both the human element and the scientific element of the disease. By talking to a particularly brave and stalwart family, the DeMoes, the author was able to give a human element to the disease, even as it was taking them to their limits. The scientific aspect talks about the history of how Alzheimer's was diagnosed and its entry into the public sphere. Many famous people have been diagnosed with it, so it has gained public interest and notoriety in some areas. Perhaps one day Alzheimer's will be a disease of the past, but at the moment it only robs one of theirs.

This book especially intrigued me since my grandmother had Alzheimer's Disease, and at the time no one knew what it was. Since she developed it so early, I never actually got to meet her. I'll be honest, some parts of the book had me choked up with emotion.

[Katie · Rating 4 out of 5]

This book follows a family carrying one of the genes for early onset Alzheimer's Disease and some of the scientists and research going on to try to find a cure. We get to know many individuals in this large family from North Dakota, and are shocked when again and again they find that they are carriers of the gene that destines them to loosing their memories, cognitive skills, body functions and lives, with symptoms starting in their mid-forties and death by their early fifties. It was interesting to follow their choices about whether to undertake genetic testing and the ramifications that had on them and the rest of the family members. One thing that became very clear was that even those who were "free" of the gene could not escape it since they had the task of caring for the many siblings, aunts, parents, cousins, spouses, and children who were eventually stricken. One solace that the family found was participating in research trials in the hopes to find a cure for future family members. The large families who carried the early onset genes have been vital for Alzheimer's researchers since they can be followed, scanned, and given early intervention drugs knowing the inevitability of the disease. I learned a lot about Alzheimer's (frightening!) and about human perseverance. It is not a casual read, and there was some jumping around that made following the scientists and multiple family members a little difficult, but the family tree and scientific timeline were very helpful to keep things straight. I'd mostly recommend this for people interested in either Alzheimer's Disease or genetics.

[Nancy · Rating 4 out of 5]

While not an easy book to read (and I took some breaks in my reading), the author tempers the technical and science with the personal stories, primarily of the DeMoe family. Because of a genetic "abnormality", this family has a preponderance of early on-set Alzheimer's disease. The six adult DeMoe children, along with some cousins and descendants, take part in research studies. Five of the six have the mutation and develope the disease. The book was published in 2017 and I wonder what further developments have taken place since then. Through the reading, I felt so involved with the family, cheering and rueing their triumphs and problems. I also learned a lot about the disease, which has also affected my own family.

"Both Alzhimer's and Down syndrome plaques are made up of amyloid beta, a fragment of the amyloid precursor protein, or APP, manufactured by chromosome 21, an extra copy of which causes Down syndrome." (42)

"By 1995, having isolated three autosomal dominant mutations that guaranteed Alzheimer's disease - APPm PS1, and PS2 ..." (93)

"In families like the Noonans and the DeMoes, genetic testing for their mutations can predict with absolute certainty from any age, including infancy, whether a person has inherited the disease. In the general population, genetic tests offer less certain results but still carry a burden of knowledge that can be life-altering: a Faustian bargain." (111)

"Some said a village priest had caused the epidemic [Alzheimer's disease in the Columbian village, Belmira] by casting a spell on parishioners who stole from the collection box." (123)

"He [Ken Kosik, neuroscientist] saw his interest in both brain science and literature as complementary obsessions, and often told his students that the humanities offer good training for science." (125)

"Since its introduction in 1975, little about the MMSE [Mini Mental State Examination] has changed. A score of 27 to 30 indicates that the person is normal, while the scores of Alzheimer's patients generally range from zero to 24." (235)

[Stive · Rating 4 out of 5]

I was diagnosed with ALS three years ago. At first, I followed the standard medical treatments, but over time, my symptoms kept getting worse. Muscle weakness, difficulty speaking, and fatigue became part of my daily life, and it felt like things were only going downhill.
Out of hope and a bit of desperation, I decided to try herbal treatment program from NaturePath Herbal Clinic. I’ll admit I was skeptical at first, but within a few months of starting the treatment, I began to notice meaningful changes. My strength gradually returned, I could speak more clearly, and my energy improved. Most importantly, the progression of symptoms seemed to slow down dramatically.
It’s been a truly life-changing experience. I feel more like myself again, and my quality of life has improved in ways I didn’t think were possible. If you or someone you love is living with ALS, I sincerely recommend looking into their natural approach. You can find more information on their website: www.naturepathherbalclinic.com.

[Patricia Rudolph · Rating 5 out of 5]

My LO has been diagnosed with Alzheimer's officially for 5 years. Memory was lost, didn't remember his mother, or past life, acted like a 12 yr old. he was 75, He had some terrible night as he kept asking to go to the bathroom and get up at night. The doctor prescribed a sleeping pill (zolpidem), but it had a very bad side effect on him (delusions and hallucinations) and we decided not to give it any more and went for the Neuro X program that was introduced to us by his primary care doctor, he was on the Neuro X program for Alzheimer’s disease from Uine Health Centre for 6 months. The treatment relieved symptoms significantly, After the treatment he’s all of a sudden back active again, almost all his symptoms are gone, no signs of agitations, his sleeps pattern are back to normal. His memory loss has greatly improved and he tells stories about his past life, we got the Neuro X program from uinehealthcentre. com

[Ermy Harrison · Rating 5 out of 5]

I was diagnosed with Alzheimer’s disease and felt like my world was falling apart. Over time, my memory and daily functioning declined, and I feared the worst. Thankfully, I discovered a treatment program from "www.earthcureherbalclinic.com". With consistent use of their natural remedies and guidance, I began to notice real improvement. Today, I am completely free from Alzheimer’s symptoms. I’m beyond grateful to Dr. Madida Sam at Earth Cure Herbal Clinic for giving me my life back. You can email them at "[email protected]". What’s even more amazing is that a very good friend of mine, who had been suffering from Postural Orthostatic Tachycardia Syndrome (POTS) and epilepsy, also found healing through Dr. Madida Sam’s treatment program. After struggling for years with no lasting solution, she is now completely symptom-free as well. We both owe our health and renewed hope to the care and expertise of Earth Cure Herbal Clinic.

[Sandra · Rating 3 out of 5]

The book was well-done with a lot of information, but I found it to get bogged down often. While the DeMoe family was the main focus, there was a second family (Noonan) that was talked about a lot, without a helpful family tree like given to the demoes, so I would lose track of who was who. Some of the science/clinical trial chapters seemed to drag at times, and there were repetitions occasionally. I learned some things, but maybe would have liked some brain images or other visual aids for the discussions on Alzheimer's (there were photos of the DeMoes in the book, so they could have been added with those). Overall, I'm impressed by how much the author fit into the book & I found it emotionally affecting as well; I just found it to be a little too much/dense at times and easy to be distracted from. Probably 3.5 stars

[Kathy · Rating 4 out of 5]

This was a fascinating book on many levels--the topic of Alzheimer's Disease and the focus on a North Dakota family with the genetic disposition toward the disease. I appreciated the way the book alternated between the story of the DeMoe family with research and developments in the study of Alzheimer's Disease. I recognized things from my own life's journey with a grandmother who had dementia and a father who developed dementia late in life after a severe fall and brain trauma. I learned that the Obama administration set a goal of finding a way to prevent or cure Alzheimer's by 2025. While neither a quick nor easy read, it is one to consider because the incidence of Alzheimer's is rising and will continue to do so more and more in the decades ahead.

[Ashleycarolhall O'Toole · Rating 5 out of 5]

Just starting a journey with mild memory loss in a parent… I grabbed everything off the library shelf. This book is a hard read but I got invested in the family’s story. I can’t imagine how hard this extra type of Alzheimer’s (I believe they used the term insidious!!) would be to experience.
As I said we are just started with mild memory loss & I hope we don’t enter into such an extreme case, but as only daughter I (and my family) are in it for the long haul.

This book had a lot of research parts talking about drugs and getting drugs accepted for use by FDA etc. I was interested but that part could get hard to read because I don’t know the science behind it. I definitely enjoyed the story part more.

[Christina Dudley · Rating 4 out of 5]

A fascinating, comprehensive, well-researched book that traces the history of Alzheimer's research and treatment from its discovery to 2014, while at the same time telling the moving story of the DeMoe family who, through a genetic mutation, suffer from the early-onset variety across generations.

The author writes with clarity and sympathy, and the book gave me new things to think about in how we will face later stages of my MIL's dementia.

I wish more had been said about possible causes in the non-inherited disease's sharp increase, but it was good to learn some possible breakthroughs lie in the next 10-20 years.

[Jennifer Record · Rating 5 out of 5]

This book was so well written- a perfect blend of personal experiences of one family and tracking the scientific research of the disease. I can’t recommend this book enough for anyone personally affected by Alzheimer’s. It gave me the hope and insight I’ve craved as I watch my matriarchy succumb to this horrific disease. A step- grandmother has passed, paternal grandmother about to enter hospice care, and I am a caregiver to my maternal grandmother. I fear being struck by this disease more than I’ve ever feared anything. Not as much for myself, but the pain and heartache of my loved ones.
This book left me feeling like there IS a light at the end of the dark tunnel that is Alzheimer’s.

[Susan Chambers · Rating 5 out of 5]

Compelling, passionate and inspiring book about Alzheimer's and families, caregivers and science. This book is for everyone and certainly hit the mark for me as Alzheimer's galloped through my father's side of our family. The families stunned me with their openness, courage, help, and sacrifice. I owe them a debt. I hope they will be rewarded somehow....maybe their contribution is enough for them. I wish I could do more. I'm part of a DIAN registry. I participated in a spit test and mailed it in. Thanked and said they would Not disclose any personal info to you. Advised visiting genetic counselor to get such. Please read this book. Clearly and beautifully written. Ten stars.

[Jill Hennessy · Rating 5 out of 5]

For anyone interested in the battle against Alzheimer's Disease (and it is a battle), this is a must read. It follows the lives of the DeMeo family, an ordinary family faced with an extraordinary burden, one they manage with strength and grace and courage. The author follows the family as the disease creeps into each generation, and combines their story with the scientific research that has been done and continues to be done to beat this disease. There is no cure, but there are scientists, patients, drug companies, and yes, politicians, who are working relentlessly to find one. This book does an amazing job of bringing awareness to this devastating disease.

[Karen · Rating 5 out of 5]

Author, Niki Kapsambelis, did a thorough and excellent job researching Alzheimier's disease in order to write this book. She wrote what she learned in language and style that made it easy and interesting for laymen to comprehend. Not only does the reader clearly learn about current findings, but also learns of the personal lives of the doctors, scientists, sufferers of the disease and their families. This science book reads like a novel all the while delivering current information on what has been learned and what is being done to help rid humanity of this horrendous condition.

[Emily Ahlqvist · Rating 5 out of 5]

If Alzheimers has ever affected any of your loved ones, I encourage you to read this book. "The Inheritance" tells the story of the DeMoe family, and others like them from around the world, who were ravaged by early on-set Alzheimers, a genetic disease that has a 50% chance of being passed from generation to generation, but then courageously became research subjects for scientists desperately trying to figure out how best to prevent and cure this terrible disease. This book illuminates why Alzheimer's has been so hard to prevent, detect, and cure and why it should receive national attention.

[Kyla · Rating 4 out of 5]

**** 1/2
An excellent book that provides a look at the disease from the perspective of the very people who are suffering through it but also through the Scientists that are researching it. Chapters alternate between viewpoints. I appreciated that the scientific parts of the books were not too challenging to get through, and to understand. But as much as I found this book interesting it was also very scary. To see the effects that Alzheimers has and how almost no one in the DeMoe family was spared was difficult.

[Carol · Rating 4 out of 5]

A fascinating study of families with an inherited gene that causes Alzheimer's and of the history, research and discoveries concerning the disease in general. Quite interesting. At the same time I found myself questioning my own cognition, something that often happens when one studies a particular disease, I believe.

If nothing else, this motivated me to continue physical activity and healthful nutrition!

[Dana-gabriel · Rating 3 out of 5]

I gave this book three stars because it was full of helpful information but the narrative was written in a choppy style that made it hard for me to be drawn into. It is still a book worth reading if you are interested or affected by Alzheimer's. The family the book depicts is a committed, generous family. I am glad to have learned of their sacrifices for the good of future generations who may be impacted by Alzheimer's.