New book provides vision on reforming Alzheimer's disease treatment

A call for major reform in the direction of Alzheimer-s treatment and patient care as the boomer generation ages

Although a new surge of scientific research has uncovered telltale signs of Alzheimer's disease that show up in brain scans and spinal taps, many questions remain unanswered about the clinical value of early testing and the overall direction of patient care, according to Dr. Kenneth S. Kosik, Harriman Professor of Neuroscience Research at the University of California and co-director of UCSB's Neuroscience Research Institute.

Kosik, also formerly a longtime neurologist at the Brigham and Women's Hospital memory clinic in Boston, cautioned that such "biomarker" tests for Alzheimer's do not address the most devastating issues presented by the disease. Indeed, he said, without substantial reforms in the treatment of Alzheimer's, the advent of early testing may only increase the anxiety of patients and their families.

"Suppose you test positive, then what?" Kosik said in a recent interview. "The test doesn't tell you when you might be likely to get the disease, for example. Patients and families will inevitably have many questions about what lies ahead. Unfortunately, the medical system is not set up to answer them."

In his new book, THE ALZHEIMER'S SOLUTION: HOW TODAY'S CARE IS FAILING MILLIONS-AND HOW WE CAN DO BETTER (Prometheus Books, $19) Kosik and co-author Ellen Clegg, a former journalist and science communication specialist at the Broad Institute of MIT and Harvard, provide a bold vision for reforming Alzheimer's disease treatment, and outline an array of simple preventive measures that patients can take to delay the onset of symptoms.

The average time from diagnosis to death in patients with Alzheimer's disease is ten years, Kosik said, a time when interest in the patient's welfare by the medical establishment wanes rapidly. Patients and their families are left in a desperate search for information about treatment, experimental leads and clinical trials, and basic support.

While recent news reports have highlighted stepped-up collaboration among scientists in government agencies, universities, and private industry to develop new Alzheimer's drugs, there is certainly no cure on the immediate horizon. Indeed, the drugs currently on the market are not effective as the disease takes its devastating course. "We have no satisfactory treatment for Alzheimer's disease," Kosik said. "If you have a problem for which neither surgery nor pills will work, then the medical system is really more of an obstacle than a help." He explained that people don't generally know this and they think that if they have a medical problem, they should seek help within the medical system. "It need not work that way," he said.

New ethical guidelines are needed to address how testing is handled and for end-of-life care, Kosik argues. The authors recommend clear discussion of medical wishes at the earliest possible stage among patients, families, and physicians. In his clinical work, Kosik found that many patients say they would rather not go on living than accept an illness that will rob their life of dignity.

The time to act is now, the authors write in THE ALZHEIMER'S SOLUTION. With the aging of nearly 80 million baby boomers, Alzheimer's disease is an impending epidemic. To meet this challenge, Kosik and Clegg propose that a network of one-stop centers should be established to provide expertise and reliable information on a range of topics, including diet, physical and cognitive exercise programs that may help reduce the risk for dementia, and palliative measures to reduce suffering. The centers they describe would take a family-oriented, personalized approach to care and prevention, creating an atmosphere conducive to adult learning, and facilitating personal growth in areas that patients have enjoyed over a lifetime, including the arts, dance, socializing, and a host of other possibilities.