Early-Onset Alzheimer’s: Holding Out Hope

IT’S A COMMON joke at cocktail parties. Someone in their early 50s laments a sudden tendency to misplace their eyeglasses or keys, and inevitably someone chimes in: “It must be Alzheimer’s!” People chuckle because no one that young really believes this memory-ravaging disease is an imminent threat. After all, Alzheimer’s is an “old person’s disease.” Or is it?

With her shiny auburn hair, lithe dancer’s figure and radiant smile, Susan Morales does not fit the stereotypical image of an Alzheimer’s patient. Susan was 51 years old and at the top of her game as a regional director for a national insurance company when friends and colleagues began noticing a change in her behavior and personality. A highenergy, detail-oriented high-achiever Susan had begun absent-mindedly repeating herself and seemed to struggle to gather her thoughts before speaking. It was her boss who eventually suggested she see a doctor. “Looking back, I was definitely in denial,” says Susan. “I’m a UCLA graduate and a registered nurse, so I could tell something was off. But nothing could have prepared me for the final diagnosis.”

Susan underwent a battery of tests that included an MRI, PET scan,CT scan, lumbar puncture, psychological evaluations and blood work. Then in 2005, at the age of 55, Susan was diagnosed with early-onset Alzheimer’s.

Understanding Early-Onset Alzheimer’s

Early-onset Alzheimer’s, also called familial Alzheimer’s disease, is a rare, inherited form of Alzheimer’s that affects individuals younger than 65 years of age. According to the Mayo Foundation for Medical Education and Research, early-onset Alzheimer’s disease accounts for only 5 to 10 percent of all cases of Alzheimer’s disease. Those who contract the disease early in life almost always have a family history of Alzheimer’s. If even one parent has early-onset Alzheimer’s, offspring have a 50 percent chance of inheriting the disease. If both parents have the disease, children will eventually suffer from it too. But statistics always have exceptions; in Susan’s case, there is no family history of Alzheimer’s at all. She suffers from a variant form of the disease for which there is still little scientific data.

The symptoms of Alzheimer’s are the same for both late- and early-onset, as are treatment options. Many people take medication and are encouraged to adopt healthy lifestyle choices to slow the progression of the disease. Although some experts believe that early-onset Alzheimer’s progresses at a faster rate, evidence supporting this theory remains inconclusive. It may be that in younger people the decline in mental functioning is more noticeable and, therefore, appears to be occurring at a faster rate. But each case of Alzheimer’s is as unique as the individual battling the disease.

“What we’ve learned is that if you’ve met one Alzheimer’s patient, you’ve really only met one Alzheimer’s patient,” explains Serge Morales, Susan’s husband. “Everyone reacts differently to medication and treatment. In Susan’s case, we’ve been fortunate, because most people meeting her for the first time have no idea she suffers from this disease.”

Exploring Treatment Options

Alzheimer’s is a progressive degenerative disease with no cure. At best, current treatments can slow the worsening of symptoms and improve quality of life for patients and caregivers.

Over the last 15 years, scientists have made enormous strides in understanding how Alzheimer’s disease affects the brain. Current FDA-approved drugs temporarily improve the symptoms of the disease; they do not stop the damage to brain cells that causes the disease to progress. But scientists remain optimistic that in the near future, therapies and treatments that slow or stop the progression of the disease will be available.

Susan was fortunate because she had access to some of the best medical and research facilities at UCLA Medical Center in Los Angeles. Susan’s physician, Mario F. Mendez, MD, PhD, is a behavioral neurologist at the forefront of dementia-related research. “Dr. Mendes immediately put me on Aricept and Namenda, two FDA-approved medications for Alzheimer’s symptoms,” Susan says. “I also participated in a clinical trial for RI (rage inhibitor), and I am currently in the early stages of a clinical trial for intravenous immune globulin (IVIG).”

Susan’s IVIG study at the University of Southern California will evaluate the effectiveness and safety of immune globulin in slowing the progression of Alzheimer’s. Because it contains antiamyloid antibodies, IVIG is being studied as a treatment for Alzheimer’s disease. Researchers believe that IVIG may act on some of the underlying causes of Alzheimer’s instead of just on its symptoms, which would be a huge breakthrough for patients like Susan.

Discovering New Priorities

Being diagnosed with Alzheimer’s in your 50s immediately alters your plans and priorities. Shortly after her diagnosis, Susan took an early retirement and relinquished her driver’s license, making her dependent on Serge for tasks large and small. The transition to this level of dependence has not been easy, but Susan and Serge say they have chosen to allow this affliction to bring them closer together, dedicating their free time and energy to advocacy work. Both have become active in the Southern California chapter of the Alzheimer’s Association, speaking at 35-plus fundraising events and making multiple trips to Washington, D.C., to raise awareness and encourage more research funding.

“I didn’t want to be the face of earlyonset Alzheimer’s, but I need to show people that this is a disease that is not just affecting seniors,” Susan says. “If I can help raise awareness about this, it’s worth the time and effort.”

In addition to their advocacy work, Susan and Serge say they have endeavored to stay active, attending and hosting dinner parties, and traveling to Europe and Mexico in recent years. Susan also attends a support group twice monthly where she connects with other early-onset patients. Serge has found it helpful to attend a separate support group for caregivers. “It’s important to have a safe place to share your feelings and find out how others are coping,” Serge says.

With a degenerative disease like Alzheimer’s, the prognosis for the future is unknown, a fact that is unsettling at best. But for patients like Susan, dealing with short-term memory loss has forced her to do what many healthy individuals struggle to accomplish: live in the moment. “I remain optimistic and hopeful,” says Susan. “There are so many advances in treatment and that’s encouraging. That’s why when people ask me how I’m doing, I can honestly say: ‘Right now, I’m doing very well.’”