On April 12, about 300 people met at the Sheraton Baltimore North Hotel in Towson for the Annual Spring Dementia Conference. One in three Americans will die with Alzheimer’s Disease or another form of dementia. With an aging population and a subsequent rise in the costs associated with caring for people with Alzheimer’s, the issue of Alzheimer’s research and caregiving is becoming more urgent.
Keynote speakers were Dr. Marilyn S. Albert, PhD Director of Cognitive Neuroscience at Johns Hopkins and Niki Kapsambelis, journalist and author of “Inheritance: A Family on the Front Lines of the Battle Against Alzheimer’s Disease.” Dr. Albert spoke about the current scientific studies and trials that were attempting to pinpoint early indicators of Alzheimer’s and to find treatments and cures. Alzheimer’s has a trajectory of 20-30 years, Dr. Albert explained, from the time people may begin displaying biomarkers—the biological symptoms visible in blood, cerebrospinal fluid and PET scans of the brain—to the time they become symptomatic from nerve cell loss.
Due to this new understanding that Alzheimer’s progresses over an extended period of time, Dr. Albert said, it is essential to study cognitively healthy people long before they begin exhibiting symptoms. This may suggest that one of the reasons that treatments have not been more effective may be because treatment typically begins when symptoms appear – too late in the trajectory of the disease.
Kapsambelis, a lifelong journalist, began researching for her book, “Inheritance,” in 2011. She had met the DeMoe family, the topic of Kapsambelis’ book, a few years earlier on an assignment but her vision for a book was catalyzed into action when one of the elder DeMoe siblings died from Alzheimer’s in 2011.
The DeMoe family patriarch had a gene mutation that inevitably leads to early onset Alzheimer’s disease. People with this genetic mutation will develop early onset Alzheimer’s often in their 40s and die in their 50s or early 60s. If someone carries the genetic mutation, each of their children has a 50 percent chance of inheriting the mutation. Five of six DeMoe siblings tested positive for the mutation, meaning they will develop Alzheimer’s disease. Sadly, because the family had not discovered the mutation until the DeMoe siblings were older, they already had children and even grandchildren, many of whom also tested positive for the mutation. Due to their high risk for Alzheimer’s and their unusual genetic mutation, the DeMoe’s dedicated themselves to participating in research trials and other programs to help find a treatment or cure for Alzheimer’s.
Kapsambelis described Alzheimer’s as a “public health crisis,” explaining that the lack of knowledge surrounding Alzheimer’s, even among medical professionals, “is the reason Alzheimer’s has become a public health crisis.”
After showing the audience the personal side of the story, Kapsambelis offered statistics about the direct cost to society Alzheimer’s causes. In 2016, the total cost was $236 billion, Kapsambelis said, making it to most expensive disease in America.
As the population ages, Alzheimer’s disease will become more prevalent and the number of people suffering from or impacted by the disease will continue to climb.
“If you don’t have it, chances are you’ll be taking care of someone who does. And if you’re lucky enough to escape that, you’re still going to pay for it,” Kapsambelis said.
The Alzheimer’s Association plays a major role in increasing awareness, advocacy and funding for Alzheimer’s disease. In addition to the annual dementia conference, the association offers classes and has a yearly advocacy conference on Capitol Hill.
On top of its role in advocacy and activism, the Alzheimer’s Association is available to help people with family members suffering from the disease. Their hotline number is 1-800-272-3900, with educational and support material found on their website (www.alz.org), with dementia experts that will answer any question from providing a list of diagnostic centers in the area to helping caregivers determine the best way to react to specific situation with someone with Alzheimer’s.