Approximately 5.4 million people in the United States are living with Alzheimer’s disease, the vast majority 65 years and older. But this is only the beginning—a rising life expectancy rate, combined with an enormous population of baby boomers, will balloon that number to nearly 16 million by 2050, according to figures from the Alzheimer’s Association.
If left unchecked, the Alzheimer’s epidemic could become the defining disease of future generations. It already ranks sixth among the leading causes of death for Americans age 65 and older.
On April 17, the Santa Cruz chapter of the Alzheimer’s Association will host their 16th annual Education Conference at Mount Hermon Conference Center, featuring a full day of workshops, lectures and Q&A sessions focusing on the rapidly changing landscape of the Alzheimer’s problem. Guests speakers will discuss topics ranging from the newest discoveries about the disease to the best strategies for advocacy. A number of sessions will address problems faced by those caring for a person with Alzheimer’s.
“I think families are empowered to hear other stories, and share their stories, and to also take away a few new tools,” says Dale Thielges, director of the Santa Cruz chapter of the Alzheimer’s Association.
At its worst, Alzheimer’s can cause people to forget how to walk, eat or bathe, to say nothing of keeping track of things like medication regimens or daily routines. Many acute-care facilities can offer Alzheimer’s patients the intensive attention they require—but only for those who can afford it. Spouses, sons, daughters and friends often end up assuming the role of caregiver. Typically, that means taking on a vast array of complex emotional and financial challenges.
The Alzheimer’s Association reports that caring for people with Alzheimer’s disease will cost as much as $20 trillion over the next 40 years. Last year alone, Medicare and Medicaid doled out an estimated $140 billion for people with Alzheimer’s and other dementias.
Dr. Gary Steinke, founder of the renowned Alzheimer’s Activity Center in San Jose, says that not nearly enough is being done to make the issue a priority. “Common sense doesn’t prevail,” he says. “It’s all politics, and politics will probably prevent it from happening for a while until there’s a major crisis.”
Organizations like the Activity Center take in dozens of seniors each day, feeding them lunch, leading basic exercise regimens and providing the supervision they need. Patients can spend up to 11 hours per day at the center for $65.
Angie Carrillo takes her husband John here several days a week so she can continue to work. In October 2008, John was diagnosed with early-onset Alzheimer’s. After burning through most of their nest egg, John’s pension is now able to cover the costs. She starts to sob over the phone when she recounts a recent day off.
“I went in to a restaurant and sat there and ate lunch by myself, and it was the most amazing thing,” Angie says. “There is a cost [to Alzheimer’s] that is beyond money.”
Alzheimer’s research has yielded mostly mixed results. Despite decades of data, billions of dollars spent and countless clinical trials, the disease is still incurable. But Dr. Joseph Rogers, executive director of health sciences at the Stanford Research Institute (SRI), remains confident. While it’s still working its way through trial and testing phases, Rogers says a new drug his team is working on at SRI could keep the disease from taking hold of people in the first place, rather than just treating symptoms.
One of the hallmarks of the disease is amyloid beta peptide, a protein that, if improperly managed by enzymes in the brain, can clump together to form plaques that slowly break down brain tissue. The plaque buildup typically appears as dark blotches on brain scans of Alzheimer’s patients.
Rogers writes that his team “is pursuing compounds that both inhibit (brain) inflammation, a major cause of damage in Alzheimer’s, and simultaneously inhibit the production of amyloid beta peptide, perhaps the biggest villain in this terrible disorder.”
The drug may still be years away from the clinical trial phase, but since the disease can’t be stopped once it’s started, research aimed at prevention could prove to be the Holy Grail.
“One day, we hope to have a cure for this disease,” says Thielges. “I continue to be inspired by our families living locally, and all they’re able to persevere through.”