Pat Summitt, probably one of the greatest basketball coaches ever, has stepped down as the coach of the University of Tennessee’s women’s basketball team. She announced that she had early-onset Alzheimer’s disease (AD) in August 2011, and she had coached the 2011-12 season, but today, as a result of the disease, she resigned. During her career, she won 8 NCAA Division 1 Women’s Basketball Championships, a record that is almost impossible to comprehend. Her reputation and success is the envy of college sports.
Early onset AD is usually defined as a diagnosis before the age of 65. Early onset AD may occur in individuals as young as their 30’s (very rare), but with most diagnoses in patients in their 50’s. Summitt was diagnosed at the age of 58 (and without knowing everything, she might have had symptoms earlier), so the age of onset is not unusual.
The prognosis is not good. On average, the life expectancy from diagnosis to death is about 7 years, a very short period of time. Furthermore, after nearly 1000 clinical trials of AD treatments, none have, so far, worked. In fact, there is no clear understanding of the cause of AD, which makes it much more difficult to actually discover a treatment. There are about 100 drugs in Phase II and III trials worldwide, but almost all do not provide a “cure” to AD, just better management. It’s not known that even if these drugs are successful that they will increase the lifespan of a patient. One drug on the market, etanercept, has shown some real promise in off-label use, but it has not undergone gold-standard double-blind clinical trials. The course of treatment is extremely expensive, and the drug must be delivered regularly in an intraspinal injection. It’s reversible, meaning that the drug has an unknown long-term success rate and once stopped, the patient returns to previous cognitive levels. In addition, it is unknown whether the drug increases the lifespan.
In case the reader is wondering, there really is no way to prevent the disease. Either you will get it or not, depending on unknown factors, which is quite frustrating. There is an association between certain cardiovascular diseases, diabetes, and smoking to AD, but it’s unknown whether that is a causal or indicative to AD. A Mediterranean diet (lots of whole grains, vegetables, seafood, and olive oil) may reduce risk of AD, but it also may be beneficial to cardiovascular health, which leads in a big circle back to what is causal and what isn’t. Lots of mental exercises (crossword puzzles, certain types of video games and probably Rubik’s Cube) may also be of benefit. It probably won’t prevent AD, but it may reduce the symptoms and improve quality of life. Some individuals have claimed that marijuana reduces the course of the disease, but that’s been disproven in double-blinded studies, but it doesn’t make it worse. Gingko, which the natural health people claim improves your memory; unfortunately, the science says it doesn’t do anything to help.
Claims that electrical transmission wires, aluminum, and other environmental factors cause AD were completely dismissed. Without actually knowing the pathophysiology of AD, there’s not even a definitive diagnostic test. And without that biological cause, it’s hard to determine what may or may not prevent the disease. It is frustrating to those of us interested in this neurological deficit, while being extremely frustrating to the patient and their families.
I can only hope that Pat Summitt has a productive few years with a high quality of life, and that a “cure” comes soon.