Monday, December 27, 2010

Opinion: Is it better to know your Alzheimer's risk

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New York Times

A few prominanr doctors weigh in on the subject

The decision to offer a test for Alzheimer’s disease should be based on its accuracy and reliability, not on concerns about causing psychological harm by giving a grim diagnosis.

In my experience as a physician, patients are resilient in the face of adversity. When confronted with bad news, they make positive changes in their lives, strengthen their relationships with others and make preparations for the future. They do not need our protection, but rather our support.

At some point I may be told I have the disease that will be my undoing. When that day comes I hope that my doctor will respect me enough to tell me the truth so my family and I can face the future with courage and dignity.

Mahesh Swaminathan
New York, Dec. 20, 2010

The writer is an infectious-disease specialist at Mount Sinai School of Medicine.

To the Editor:

I understand that there is no cure for Alzheimer’s disease and that little if anything can be done to postpone it or to treat it once it is manifest. But that is a clinical, medical rationale for withholding the diagnosis.

I am all too aware of what having that information means since my mother died of Alzheimer-related causes. Nevertheless, I most definitely do want to know if the same fate is in store for me so that I can begin to plan the rest of my life while I am still “in charge.”

Most important, I would invest my savings in a supportive, long-term living arrangement, one that I would choose, on my own terms. And I would decide myself what to do with all my “stuff” — my books, collections, clothing and furniture.

And then I would try to live every hour of every day with eyes and ears wide open, savoring the sights and sounds of this life as best I can, for as long as I possibly can.

Lois Bloom
Sandestin, Fla., Dec. 19, 2010

To the Editor:

Thinking of elderly patients whom I’ve known for years, I am nearly certain that informing patients of the diagnosis of Alzheimer’s disease as early as possible, or telling them of an increased risk of the disease, will be harmful on the whole.

We don’t exactly know what Alzheimer’s disease is. There are lots of different kinds of dementia, and the concept of “normal” human aging is very poorly understood.

Further, the harms can be serious; some patients may even consider assisted suicide. Several studies have been done about patients who are worried that they have Alzheimer’s. There is very real suffering involved in the anticipation, and the suffering can begin years before there is any demonstrable abnormality or disability. The diagnosis is sometimes and inexplicably shameful.

If I am to get Alzheimer’s at age 70, at what age would I like to know this? Never. I would like to notice at age 75 that my wife and kids are becoming at once oddly solicitous and a bit patronizing.

Thomas E. Finucane
Baltimore, Dec. 18, 2010

The writer is a doctor specializing in geriatrics and a professor at Johns Hopkins University School of Medicine.

To the Editor:

Anyone who has seen Alzheimer’s disease in the vacant eyes of his or her loved ones fears nothing more than seeing it in the mirror. As the caregiver for the past 17 years for both my husband (early onset Alzheimer’s) and my mother (late onset), I had a genetic screening three years ago that indicated a gene variant that puts me at increased risk.

So when doctors ask why we should test until we can effectively treat, I would respond that we, as a baby boom generation of potential victims, own that decision — not our doctors.

We should test and count ourselves among the “worried well.” Because putting our own lives on the line can take the Alzheimer’s debate out of the closet of private suffering and into the town hall of political action. We should test because hiding from the future is no longer smart living.

Knowing our risk, we would be more inclined to enlist for clinical trials. Early diagnostic testing is one way to act against Alzheimer’s, rather than waiting to be acted upon.

As a generation, we must refuse to forget who we are. This means daring to know our future.

Meryl Comer
President, Geoffrey Beene
Foundation Alzheimer’s Initiative
Washington, Dec. 19, 2010

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