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Alzheimer's disease expert has advice for caregivers

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 or (727) 893-8442.

A few tips from a guru

Get the diagnosis

Often a loved one with memory problems will resist getting tested. Share your concerns with the doctor or nurse before your loved one's next physical and let them take the lead in suggesting tests. Or stress to loved ones that you have worries about the future and ask for them to take a test for your sake.

Leave the room, then restart the discussion

Rabins has a patient who tried to help her husband put on diapers, which she calls his "underthings,'' to preserve some dignity. He resisted and grew agitated. Rather than push the issue, she said she was going to the kitchen to cook breakfast. She left the room, let a minute or two pass, then re-entered and asked, "Can I help you with your underthings?'' He said, "Sure.'' He had already forgotten the previous discussion.

I want to go home

This common request reflects anxiety about the inability to make sense of the current environment, wherever it is. It's not an actual desire to return to a specific place. Even people taken back to their childhood homes usually don't recognize it and aren't satisfied. Sometimes distraction works: "I need to do laundry first; help me fold these clothes." Or address the emotional undercurrent: "Tell me about your home and what you liked about it." Or perhaps a kind form of deflection: "We can't go today. I'm busy. We'll try tomorrow.''

Rx: No more driving

If a loved refuses to stop driving when that time comes, have their doctor write out a "prescription'' that says, "you can't drive.'' Then it's not the caregiver telling them they can't drive, it's the doctor. Keep the "prescription'' as proof because people will probably forget about any discussion they had with the doctor.

It's not personal

If people make accusations, such as "you are stealing my money," or "you are not listening," try not to take it personally. You don't have to defend yourself. Try to divert the conversation. You could say, "Let me see if I can find the bankbook. Maybe you are right. We'll go over the finances, but let me finish what I am doing."

Don't ignore other health issues

It's easy to chalk up every health problem as a symptom of Alzheimer's, but people with dementia have other, treatable problems as well. Say someone stops eating and loses weight. They could be suffering from depression or have a cold or infection. They could be reacting to medication. Have a doctor check them out.

Alzheimer's disease expert has advice for caregivers 11/23/10 [Last modified: Tuesday, November 30, 2010 6:17pm]
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