Member Reviews
Fascinating read on inherited Alzheimers. I had not realised prior to reading this book that in very rare cases, there is an inherited Alzheimers gene. The story of the De Moe family was inspiring and tremendously moving. The medical professionals dealing with the de Moe family and the families in Colombia were amazing in the way they dealt with both families, almost becoming part of the family themselves. I learnt so much more about this terrible illness.
The Inheritance by Niki Kapsambelis is one of the best books I have read on Alzheimer's disease. I would even go so far to say it is the best. The book focuses primarily on the DeMoe family. This family carries a genetic link to the disease. It is fascinating and heartbreaking at the same time. The timeline follows the family as well as researchers' race to find a treatment. Anyone with an interest in Alzheimer's especially those affected personally will find this book hard to put down. The author does an excellent job telling the DeMoe family's story with compassion.
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.
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