The Alzheimer's Action Plan

“What Would You Do If She Were Your Mother?” (Answer: Take Action!)

Imagine this scenario: You’re a career woman with a family. You’ve noticed that your mother’s memory has been going downhill for a couple of years. She mixes up the names of some of her friends, she’s missed two bill payments, and she recently dropped out of her weekly bridge club, saying she prefers being at home. She denies any memory problems and takes pleasure in saying, “Even my family doctor said I was in great shape at my last physical three weeks ago.”

You take a day off and bring her to the doctor, who sees her privately for about twenty minutes. The doctor then invites you to join them and says that your mother may have a mild memory problem (which you already knew!) but that it’s not Alzheimer’s. Your mother, relieved, smiles at the doctor and gives you an “I told you so” look. You are too uncomfortable to ask the doctor what tests she did, how accurate the tests are, and whether you should seek a second opinion. Back at home, you say to your mother, “Looks like you aced the tests the doctor gave you. Were they difficult?” Your mother answers, “All I had to do was draw a round clock. I passed, so don’t bother me about my memory anymore.”

Nearly two years after that visit, your mother’s short-term memory has gotten much worse. She repeats herself often, as though she has forgotten what she said just minutes ago. She has also stopped reading her favorite magazines, and her hairdresser says she is showing up for “appointments” that she never made. A family friend calls to say that your mother got lost on her way to their house even though she had been there many times before. You take your mother back to the doctor, and this time the doctor orders a brain scan and blood work. When the doctor calls back a few days later, she says your mother has early Alzheimer’s disease and should try a medication. The doctor does not tell you the test results or refer you to a specialist but does transfer you to the clinic’s social worker, who suggests you call the local Alzheimer’s Association chapter.

When you hang up from the call, you’re stunned and you don’t know where to begin. You have no one to help you decide whether you should tell your mother the diagnosis, whether she can live on her own, what will happen to her next. Is it a definitive diagnosis? Should you take her for another evaluation? Should she take any medications?

Your questions are beginning to snowball. You vaguely remember hearing about promising treatments on the news, and you’ve seen newspaper ads seeking participants with Alzheimer’s for a clinical trial—but how do you make sense of this information? Bewildered by the differing options for treatment and care, and worried about your own future, you wish you could ask a top doctor: “What would you do if she were your mother?”

That is just the question we want to answer in this book. As a doctor who specializes in treating and studying Alzheimer’s disease, and a social worker with years of experience teaching people how to live with and care for those with the illness, we are grounded in the latest advances in the field as well as the inside information you need to take charge. We want to help you create a plan of action to get the best diagnosis and treatment for the person in your life who has or may have Alzheimer’s. That action plan will also help you find the best support for the person with Alzheimer’s and the person taking care of him or her.

In fact, the idea for our book arose when Dr. Doraiswamy realized that he was repeatedly asked the very question posed by the daughter in this scenario. In lectures delivered to medical and lay audiences alike, the most poignant and common query was, “What would you do if your mother was starting to have memory problems?”

Embedded in that question, he understood, was people’s belief that expert physicians provide a higher level of medical care for their immediate family members or close friends than for routine patients. To test that perception, he conducted a survey of more than a hundred Alzheimer’s experts and found his intuition was correct. In each of several questions posed—whether about treatment options for early memory problems or the types of diagnostic tests doctors said they’d prescribe—the physicians said they would indeed order better, more sophisticated tests and treatments for “their own” than for the average patient.

The idea that a doctor’s family and friends might get better care than others is neither surprising nor fair. But it is a reality we’d like to change. Our intent is to open up that expert knowledge base to anyone diagnosed with Alzheimer’s or its precursors and to those who care for them so that you can get the most from your doctors, from your local chapter of the Alzheimer’s Association, the leading and the oldest Alzheimer’s support and research organization, and from other community resources.

 

Copyright © 2008 by P. Murali Doraiswamy, M.D., and Lisa P. Gwyther, M.S.W. All rights reserved.