Mt. Lebanon author discusses her book about Alzheimer’s
Photos can be deceiving. A family portrait from the 1980s shows Gail DeMoe with her six children, all of whom appear to be the proverbial picture of health.
“They couldn’t be more typical,” Mt. Lebanon resident Niki Kapsambelis, who has gotten to know the family extremely well, said.
The DeMoe family in 1986: front, from left, Karla, Gail and Lori; back, Jamie, Doug, Dean and Brian. Karla was the only sibling who tested negative for the gene for early-onset Alzheimer’s. Brian, Doug and Lori have died, but Jamie and Dean still are working and participate in University of Pittsburgh Alzheimer’s Disease Research Center studies.
Missing from the photo, though, is Gail’s husband, Galen, who had died of Alzheimer’s disease. As it turns out, he passed on a gene that resulted in five of his children being afflicted similarly.
The disease since has claimed the lives of three of them, all before age 57.
Kapsambelis chronicles the DeMoes’ story in her first book, “The Inheritance: A Family on the Front Lines of the Battle Against Alzheimer’s Disease,” which she will discuss during a program at 7 p.m. Jan. 24 at Mt. Lebanon Public Library.
The book takes its title from the propensity of family members to be born with a rare genetic mutation that causes the disease without exception. “Front lines” refers to their participation in studies by the University of Pittsburgh Alzheimer’s Disease Research Center.
“Before these people, there had never been, in the hundred-plus years that we’ve known about Alzheimer’s, a way to look at it in a living brain,” Kapsambelis explained. “So they’re basically these perfect research specimens who also happen to be really amazing human beings.
The career journalist first met family members while working on an article for the research center’s newsletter in 2009, five years after they learned about their situation and decided to have it studied as a testing ground for experimental treatments.
While the vast majority of Americans are aware of the chronic neurodegenerative disease, especially through such high-profile cases as Rita Hayworth and President Ronald Reagan, its ramifications are not widely understood, as Kapsambelis will admit about herself.
“Before I started this project, before I met the family, I didn’t even know that it was a fatal disease,” she said.
In fact, it is the sixth-leading cause of death in the United States, according to the Alzheimer’s Association, which also provides this information about the disease:
- More than 5 million Americans are living with Alzheimer’s, a number that could rise as high as 16 million by 2050.
- Since 2000, deaths from heart disease have decreased by 14 percent, while deaths from Alzheimer’s have increased by 89 percent.
- Alzheimer’s kills more people than breast cancer and prostate cancer combined.
- In 2017, Alzheimer’s and other dementias cost the nation $259 billion. By 2050, those costs could rise as high as $1.1 trillion.
“I seriously, sincerely do believe that the public is not aware of what’s coming. It has the capacity to completely overwhelm our health care system, and that is a start reality,” Kapsambelis said. “We are not paying anywhere near enough attention to Alzheimer’s.”
Rectifying that situation served as impetus for her to write “The Inheritance,” which Simon & Schuster published in March.
“As a journalist, you want to have an impact on other people’s lives,” she explained. “You want to give people information that they need. And we’re all going to need this information. We will all, to a citizen, be paying for Alzheimer’s.
“I felt it was almost like a responsibility or duty to call attention to that,” she continued, “and what better way to do it than to show people how someone as familiar to them as the DeMoes can be. They’re like everybody you ever met. It’s basically a microcosm of what we’re all going to be facing.”
The Alzheimer’s Disease Research Center study involving the DeMoes focuses on part in determining if preventive drugs can stop the growth of proteins called beta-amyloid that build up between nerve cells and are suspected of being a prime contributor to the disease.
“We know that’s part of the Alzheimer’s signature, and they think that’s sort of the first domino to fall, is you get this amyloid buildup in your brain,” Kapsambelis said. “It’s happening 20 years before you get any symptoms.”
By that time, it’s too late.
Kapsambelis did express some optimism about the future, especially in light of the DeMoes’ decision to help the cause.
“There is hope for it. There’s no such thing as a hopeless disease,” she said. “But it does require a lot of public outcry, and people need to take ownership of the problem in order to solve it.”