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"The Inheritance" follows ND family as genetic Alzheimer's becomes legacy

Carol Bradley Bursack, Minding Our Elders columnist

Dear Readers: For most people, finding out that they have come into an inheritance is a positive experience. Not so when that inheritance is early onset familial Alzheimer's disease (eFAD). This type of inheritance involves a gene each family member has a 50 percent chance of inheriting.

For those who inherit this gene, the chance of developing Alzheimer's disease is 100 percent. In her new book "The Inheritance," Niki Kapsambelis chronicles the story of a North Dakota family facing such a reality.

"The Inheritance" inserts the reader into the lives of a courageous North Dakota family that has been involved in Alzheimer's research for decades. Their journey began in the early 1970s when Galen DeMoe began flying into such fits of rage that the family lived in fear.

DeMoe, then in his 40s, was admitted to the mental hospital in Jamestown, ND, to determine if he had a mental illness. The hospital was unable to help him so DeMoe was admitted to a facility in St. Cloud, Minn. He became part of a study that tracked people with "organic brain syndrome."

Kapsambelis inserts the reader into the family saga as she writes, "Galen, whom everyone called Moe, had been working in the oil fields for a quarter of a century and knew them like the back of his weather-beaten hand. But on this day, he sat in his truck, confused and desperate, with no idea where he was supposed to go."

That confusion and desperation brought terror to Moe as well as his family. Moe's violence eventually split his family and caused his hospitalization.

Kapsambelis skillfully interweaves the boisterous, fun-loving DeMoe family life with information about Alzheimer's disease as it evolved from its discovery by Dr. Aloysius "Alois" Alzheimer.

The death of one of Alois Alzheimer's patients, in 1906, and his subsequent autopsy of her brain, is considered the starting point of Alzheimer's research. Not until the 1970s, however, was there much support for Dr. Alzheimer's theory that what happened to his patient was not simply the effects of old age. The 21st century has moved science forward, but there is still much that is unknown about the disease that came to bear Alzheimer's name.

Families like the DeMoes provide researchers with their best chance to study the disease as it develops and progresses. Of the six DeMoe children whose father had the disease, five inherited the gene. The sixth, Karla, was spared the disease only to become the family caregiver.

"The Inheritance" is the result of several years of writing and interviewing. Kapsambelis offers an intimate look at a family that has fought — and is still fighting — the savageness of Alzheimer's. Their story is intense and raw, yet greater understanding of the disease, as well as admiration for this family, are the ultimate takeaways for the reader.

Alzheimer's affects everyone. If no progress is made in preventing or curing the disease, it will bankrupt global health systems.

Families like the DeMoes are vital to ongoing research but studies need people who have no known connection to Alzheimer's as well.

If you want to help, go to the National Institutes of Health website and see if there is a clinical study for which you'd qualify.

Carol Bradley Bursack is the author of a support book on caregiving and runs a website supporting caregivers at www.mindingourelders.com. She can be reached at carolbursack@msn.com.

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