Dear Helpline  

My father suffers from Alzheimer’s disease and I am increasingly concerned about myself and wondering whether I am also likely to develop the disease. I have read about genetic testing that would let me know what the future may hold for me. Is this something I should consider?
— Curious in Queens
Dear Curious,

Genetic testing for Alzheimer’s disease (AD) is an issue that comes up quite often on the Chapter’s 24- hour Helpline. People throughout the five boroughs are wondering whether or not they should get tested and what the implications of the test results may be.

What Does the Test Look For?
Scientists have identified one gene—apolipoprotein (APOE)—which may be related to memory. When undergoing genetic testing for Alzheimer’s disease, the information you receive concerns this gene.

APOE has three common forms: e2, e3, or e4. We all inherit one form of the gene from each parent. APOE-e4 is the form associated with Alzheimer’s disease. Those of us who carry one APOE-e4 gene have three to five percent higher risk of developing AD than those who do not inherit APOE-e4. And those who inherit two copies of APOE-e4 have a fifteen percent greater risk of developing the disease. The average lifetime risk of ever developing Alzheimer’s disease is approximately ten percent in the general population.

Remember, an increase in risk does not mean you will develop the disease: people with two copies of APOEe4 do not invariably develop Alzheimer’s disease, and in many cases the disease occurs in individuals who have not inherited any copies of the gene.

It is also important to remember that there are currently no effective preventive treatments available for AD.

With this in mind, it is important to ask yourself, “What are the practical implications of getting tested?”

Should I Get Tested?
Some people want to know despite the fact that there is nothing they can do about it. Others express not wanting to know for that very reason. And still others fear being denied insurance or future care because of a positive test result.

Federal law prohibits health insurance companies and employers from discriminating based on a positive test for APOE-e4. However, this law does not apply to long-term care or disability insurance. Anonymous testing may resolve this issue and should be available in your area. Check with your doctor for more information about anonymous testing, which would protect privacy, further prevent discrimination, and keep test results from becoming part of medical records.

Historically, some in the field have expressed concern that a positive test result could have serious negative implications on one’s psychological well being. After all, if nothing can be done to treat or prevent the disease, what are the benefits of knowing what your future may hold?

You may have read the results of the REVEAL study in the July 16 issue of The New York Times, which found that learning of your APOE-e4 status does not cause psychological harm.

Before you run out to get tested, keep in mind that this is only one study, and the results cannot necessarily be generalized to the larger population. The REVEAL study, which garnered very interesting results, sampled only 162 adults.

What it boils down to is that individuals need to determine what is best for them. Weigh your options carefully and discuss them with your physician. If you decide to move forward, genetic counseling will be provided before a test is ordered and again when the results are obtained. Genetic counselors will also be helpful in determining if testing is the right choice for you.

Whatever you decide, our 24-hour Helpline is here to provide you with education, information and support throughout your journey with Alzheimer’s disease.

The 24-hour Helpline is always available to answer your questions and help you through difficult times. We can be reached 24 hours a day, 7 days a week, 365 days a year at 800-272-3900