Take a Closer Look at Gene Testing for Alzheimer’s Disease
More than five million Americans are living with Alzheimer’s disease, and there is currently no cure for this degenerative brain disease.
Doctors are not sure what causes Alzheimer’s disease – is it lifestyle? Aging? Environmental factors? The data indicates that a combination of factors likely causes Alzheimer’s. However, it’s important to know that in some cases, there is a genetic component.
Is There a Test for the Alzheimer’s Gene?
There is now a test for Alzheimer’s genes.
In a white paper about genetic testing for the disease, the Alzheimer’s Association states, “At this time, genetic tests that determine susceptibility to Alzheimer’s disease are primarily of value in a research setting. Many people develop Alzheimer’s dementia without having the Alzheimer’s risk gene identified by this test; and many people with the gene do not develop Alzheimer’s dementia.”
Genetic Testing Explained by an Expert
We asked Dr. G. Allen Power, MD, author of Dementia Beyond Drugs: Changing the Culture of Care and Dementia Beyond Disease: Enhancing Well-Being, for his insights on the Alzheimer’s genetic test.
“First of all,” he says, “the gene that carries the high risk of younger-onset Alzheimer's across multiple family members (APOE4) is relatively rare. Only about 1-2% of people with Alzheimer's have this type of disorder, and most other forms of dementia do not have a strong genetic component.”
Dr. Power added: “Beyond that, some other genes may increase one's lifetime risk, but not to such a great extent. The risk of getting Alzheimer's, like most dementias, usually increases with age, meaning it's mostly caused by a combination of factors that occur cumulatively as we live our lives, not by our genes. Even most of those who develop symptoms before age 65 are simply on the end of the bell curve and not subject to a strong genetic cause.”
The Pros & Cons of Alzheimer’s Disease Gene Testing
So, what precisely are the pros and cons of testing for the Alzheimer’s gene? In the opinion of Dr. Power, who speaks about dementia around the world, these are the possible pros and cons of getting the genetic test for Alzheimer’s disease:
Pros
“For those who want to engage in research trials to treat or prevent a familial form of dementia, a test would be useful. Also, for some people, the knowledge of their increased lifetime risk might help them to plan and prioritize their lives. But once again, the testing will not tell you for sure if you will get dementia – only if your risk is higher or lower than others. And many conditions like vascular dementia have no gene testing.”
Cons
“The biggest drawbacks have to do with the enormous stigma and fear that still surrounds the diagnosis and how society continues to view and treat people. This cannot be overstated. Just last week at a conference, I met a woman who had been diagnosed – not with dementia but with mild cognitive impairment – and her family was already trying to take over all of her life choices and decisions.”
Potential After Effects of Alzheimer’s Genetic Testing to Consider
Dr. Power urges people to carefully consider the possible ramifications of Alzheimer’s gene testing.
“Imagine the scrutiny that can occur when you are found to be ‘at higher risk.’ If you have a little fender-bender, as many of us have; if you leave a burner on, as many of us have; if you pay a bill a few days late, as many of us have (I've done all three) – and how people may begin to erode your rights as soon as these happen.”
“It is no surprise that many people with dementia stay ‘in the closet’ – and, unfortunately, our media and even our medical and advocacy groups often ramp up the stigma and fear to sell more newspapers or raise more funds.”
“I think the best way to balance the pros and cons is to move to a society where we can help each person to know that it is possible to live fully with a diagnosis of dementia, irrespective of current or future medications, and to create communities that respect the rights of people to be heard and included to the greatest extent possible.”
Should I Get Tested for the Alzheimer’s Gene?
Like other experts, Dr. Power strongly cautions those who get the Alzheimer’s genetic test.
“I would recommend gene testing for those who have a very strong family history of younger-onset Alzheimer's and who want to know if they carry the APOE4 gene,” he said. “But keep in mind that even having the gene is not a guarantee you will develop dementia.”
How Do You Get Tested for the Alzheimer’s Gene?
If you’re interested in getting tested, talk to your primary doctor. If they agree that genetic testing will be helpful for you, ask them to help you find:
- A genetic test that identifies the risk genes (those that increase one’s risk of developing Alzheimer’s but do not guarantee it) and deterministic genes (those that directly cause Alzheimer’s disease, usually the early-onset form) for Alzheimer’s in DNA samples.
- A local genetic counselor who will provide valuable information to help you prepare for the test and process its results.
Find Reliable In-Home Alzheimer’s Support
Caring for a loved one with Alzheimer’s dementia is an incredibly demanding process. Keeping them in the familiar surroundings of their home can provide profound comfort, but they will still require around-the clock support. You don’t have to see them through their disease progression alone. For professional and compassionate in-home Alzheimer's and dementia care services, contact your local Homewatch CareGivers.
In the meantime, browse our online resources about dementia.
