Do I Have the Alzheimer’s Gene?

Q. My father and several of my aunts and uncles on his side and on my mother’s side have had Alzheimer’s disease, so I know that it is common in my family. I wish there was a way to know if I will get it too, so I could start on my bucket list now and plan ahead.  I read recently that you can undergo genetic testing to see if you have the Alzheimer’s gene? Do you recommend it, and if so, how accurate of a predictor is it? Thanks for your help!

A.  Genes help control the function of every cell in your body, from the color of your eyes and hair, to whether you are more likely to develop certain diseases, including Alzheimer’s. At this time, researchers have identified a number of genes associated with Alzheimer’s disease. Genetic risk factors are just one of the factors involved in getting it.

The Alzheimer’s Disease Genetics Study, which is being sponsored by the National Institute on Aging, is examining genetic information from families that have at least two family members who have developed Alzheimer’s after age 65. It began in 2001 and will end in 2021. The purpose of the study is to identify and analyze the genes that cause late-onset Alzheimer’s disease. Unfortunately, the results won’t be available for another five years. Until then, there has been some other research that indicates that genetic testing for an Alzheimer’s gene is possible and available.

In general, medical centers offer genetic testing as a clinical service. Patients are generally required to pay for the diagnostic test out of pocket, though some health insurance carriers may cover certain genetic tests. Participants can choose whether or not to be told their test results. Part of the reason why people choose to get tested in a research setting is that this information need not become part of their medical record.

Candidates for genetic testing cite a range of reasons for doing so, including:

They feel like they need to know. Particularly as they approach the age of disease onset in their family, their anxiety intensifies and they want to know how probable it is that they will get the disease.

They are motivated to contribute to genetic research, either for their own benefit or that of their younger relatives and coming generations.

They hope that effective treatment will be developed in time for them, and hope to be eligible to participate in clinical trials.

Some believe they already have the disease. Fear makes them doubt their mental faculty, and question every instance of forgetting. Interestingly, many of these cases prove not to carry the gene at all.

People want to plan their finances, for long-term care, retirement, advance directives, and estate planning documents.

People want to plan their families: will they have children or not, get married or not?

People want to make changes in their lifestyle include spending more time with family, exercising, eating healthy, etc.

People want to know what to tell their children and other loved ones.

Should you be tested for the Alzheimer’s Gene?

Getting tested for the Alzheimer’s gene has advantages and disadvantages, as explained by the experts:

Don’t get tested: Even though you can be tested for a gene that would show you to have a predisposition to Alzheimer’s, Dr. Richard Caselli, a top neurologist doesn’t think you should. According to Caselli, “(a)bout 20% to 25% of North Americans carry this particular gene—the percentage varies by geography. That’s a significant number.” Caselli says.  However, according to research, the gene variant for Alzheimer’s has been found in healthy members of the community as well as those who develop Alzheimer’s disease. Therefore, current genetic tests that claim to predict risk of Alzheimer’s disease are limited and unlikely to do anything other than create unnecessary anxiety, or a false sense of security.

According to Caselli, “It would be a different story if genetic testing could lead to treatment that would forge a better outcome. But Alzheimer’s testing won’t really improve the subject’s quality of life.” He asks, “What are you going to do? Tell people not to have kids because they’ll get Alzheimer’s when they’re 75 years old?”

Get tested: Dr. Mary Lou Jepson, a former top technologist at Google and Facebook disagrees. Jepson said she has been tested. “Why wouldn’t I want to know?” she asked.

She may have a different perspective based on her own personal experience. Twenty-one years ago Jepson was afflicted with a mystery illness that put her in a wheelchair and covered her in sores. The cause turned out to be an diagnosed brain tumor, which led to life-saving surgery. In her case, early detection definitely led to better quality of life. She would hope the same could happen for those who find out through genetic testing that they are predisposed to Alzheimer’s disease.

Another Way to Detect Alzheimer’s Before Symptoms Appear

Besides genetic testing, a team of researchers at Massachusetts General Hospital (MGH) have found another way to spot Alzheimer’s in the early presymptomatic stages of the disease, using brain scans. The scans revealed that those with the disease had asymmetrical brain structures in the left and right sides of the brain.

According to researchers, “(i)f presymptomatic or early-stage individuals at risk of developing the disease are identified, they can be recruited into studies investigating novel therapies, because preventive treatment can still be successful.”

Whether or not you choose to find out if you have the Alzheimer’s gene, or if your brain is asymmetrical is up to you. Regardless, it is always prudent to plan ahead!

Medicaid Planning for Alzheimer’s and Other Types of Dementia

Alzheimer’s is the biggest health and social care challenge of our generation, and a diagnosis of the disease is life-changing.  When it comes to planning for long-term care needs, generally, the earlier someone with dementia plans, the better.  But it is never too late to begin the process of Long-term Care Planning, also called Lifecare Planning and Medicaid Asset Protection Planning.

At Farr Law Firm, P.C., we are dedicated to easing the financial and emotional burden on those suffering from dementia and their loved ones. Please call us as soon as possible to make an appointment for a no-cost consultation:

Fairfax Elder Law: 703-691-1888
Fredericksburg Elder Law: 540-479-1435
Rockville Elder Law: 301-519-8041
DC Elder Law: 202-587-2797

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.

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