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Life After Alzheimer's: How patients continue to laugh, love, and give back to their community

Brey, Robin L. M.D.

doi: 10.1097/01.NNN.0000267347.00379.0f
Department: From the Editor

Life After Alzheimer's disease


I've been a neurologist for over 20 years, and of all of the neurological disorders that I have diagnosed, dementia is one of the most frightening. The ability to think, remember, plan and learn is something most of us take for granted. It forms the basis of who we are and allows us to operate independently, to take care of ourselves and our families. So, it is not hard to imagine that the diagnosis, “probable Alzheimer's disease,” triggers fear, anxiety, sadness, anger—and denial, as we hear from the three people featured in our Special Report on early-stage Alzheimer's.

When you hear the word “Alzheimer's,” what is the first image that comes to mind? For many, it is an elderly, frail person who has lost the ability to reason and care for himself, a person totally dependent on others for his care, possibly in a nursing home. But there are an estimated 4.5 million Americans living with Alzheimer's today, many in the early stages. These people look quite different from the image I just described.



I am extremely grateful to the three people with early-stage Alzheimer's who agreed to be profiled in this issue of Neurology Now—George Rapoport, Mary Carver, and Lee Robins. It is a privilege to share their stories, see how the disease has affected their lives, and learn what has helped them deal with it.

The message that comes through loud and clear from all three is that the diagnosis of Alzheimer's is not the end. It is still possible to laugh, to love life, and to give of yourself back to your community. George Rapoport can still drive, though he confines his driving these days to the open roads near his weekend country home. Lee Robins travels independently, taking a bus and several subways to his support group meeting each week.

The other message that comes through from both George Rapoport and Mary Carver is how isolated people can become when they develop Alzheimer's. There are many possible reasons for this. Some people have a fear of getting lost, while others find their memory loss makes it difficult to do things they once enjoyed. Robins wonders why he sleeps until 2 or 3 in the afternoon. Is he withdrawn and a loner like his father? Or is the feeling of inertia part of his condition? Whatever the reason, our experts make it clear that it is really important to fight this isolation and do whatever possible to find enjoyment in life—whether taking art classes or visiting the dinosaurs at the local museum.

As our Special Report describes, we now have better tests to help us make the diagnosis of Alzheimer's much earlier in the process, and, maybe even more importantly, find other treatable diseases that can have the same symptoms of Alzheimer's, like a low functioning thyroid gland or a vitamin deficiency. And we are at a critical and exciting crossroads in research as we await the results of several important new clinical trials.

We also have better ways to treat people with Alzheimer's, including medications for memory loss, as well as other symptoms that sometimes accompany the condition:depression, sleep disorders, and irritability. We also know now—and the research supports this—that it is very important to stay socially and emotionally connected through support groups, and that mental exercises such as puzzles and other brain teasers keep a normally functioning mind strong and may even help a person with mild dementia function better.

Rapoport tells us, “If I could have something to do, to give back to somebody, that'd be perfection.” Fortunately, there are groups, programs, and activities in many cities for people with Alzheimer's that help people do just that.

If you suspect that you or someone you love may have Alzheimer's, follow the advice of Lee Robins: “Get checked!” The first step for any illness is to get the right diagnosis. Then help is possible.

Robin L. Brey, M.D.


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