Dr. Peter Rabins is to Alzheimer's disease caregiving what Rick Steves is to European travel: Just about everybody carries around his little book. Rabins, professor of psychiatry at Johns Hopkins Medical Institute, co-authored the 36-Hour Day three decades ago — a classic how-to book about coping with people who have dementia. It has sold 2.5 million copies and is in its fifth printing. Last month, Arden Courts of Largo, a dementia-specific assisted-living home, brought to him to Pinellas for a speech and a little one-on-one time with 150 or so family caregivers and professional workers who otherwise rely on his book. Rabins also sat down with LifeTimes.
Do you see major medication breakthroughs in the next five years?
It's hard to predict. There are now more than 75 drugs in development, and it is certainly possible that one will make a documented difference. I think that prevention is the key — stopping the disease process — because once brain cells die, they don't come back.
What are my chances of getting Alzheimer's?
We know that at age 80, the general population has about a 20 to 25 percent chance. If you have a once-removed relative, like a sibling or parent, with Alzheimer's, then your chances are more like 30 to 40 percent. If you don't, your chances are 10 to 15 percent.
So Alzheimer's is hereditary?
There are at least three genes that influence your chances of getting Alzheimer's, and maybe 30 to 60 percent of people (with Alzheimer's) have one of those genetic markers. But there are also people with those genes who live to be 100 and they are clean. So we know that environment plays a role too. About 30 to 50 percent of Alzheimer's cases are not genetic. Having a head injury where you lost consciousness any time in your life makes it more likely. Women have a higher incidence than men at all ages.
Can we do anything to prevent Alzheimer's?
Anything you can do to decrease vascular problems helps, like controlling high blood pressure and high cholesterol, losing weight. Those are the things we can do to lower our risk.
What about crosswords or Internet puzzle programs?
There is evidence that people who practice a specific level of tests do better on those tests. We just aren't sure that it improves memory. It's possible, but one should be very skeptical. Studies show that people with more physical or social activity over time are less likely to get dementia. The problem is that we now know that Alzheimer's is beginning in the brain 10 to 20 years before symptoms show up. We don't know if the lack of exercise and social activity is, in fact, the beginning of the disease.
There has been a lot of publicity lately about PET scans and spinal taps being able to predict who will get Alzheimer's. Would you recommend that people get those tests?
If people really want to know their risk, I don't see that they can't do it. The tests showed that people who were already starting to have problems and who had higher levels of (the amyloid protein) were more likely to develop Alzheimer's. We don't know yet whether normal people with excessive amyloid are at excess risk. We haven't followed them. I think we will know that in four to five years.
What one piece of advice would you want to leave with caregivers?
People should learn what they can about each step of the disease that their loved one is at. Then they have to make sure that they have their own social, physical and mental outlets, and don't get consumed by the caregiving role.
Stephen Nohlgren can be reached at firstname.lastname@example.org or (727) 893-8442.