Experts are warning that although a genetic screening can show a person’s potential risk for developing Alzheimer’s disease, there’s no need to run out to get tested.
The test can reveal whether a person has a specific form of the apolipoprotein E — or APOE — gene on the 19th chromosome, which can indicate a genetic risk factor. However, that risk factor alone doesn’t mean you’ll develop Alzheimer’s, experts say.
“I am not an advocate of genetic screening,” said Dr. Heidi Wierman, director of the geriatric division at Maine Medical Center, said. “Even if you test for APOE or have that family history, it does not mean you are in danger of a diagnosis in the future.”
Laurie Trenholm, executive director of the Maine Alzheimer’s Association, echoed Wierman’s sentiments and said that being a carrier of the APOE gene does not mean Alzheimer’s will be a person’s future reality.
“Our association’s stance is to not even get tested,” Trenholm said. “We are not denying the gene has been identified, but it does not mean it is going to manifest into or lead to dementia.”
There also is no denying family history can play a part in a person’s risk for being diagnosed with Alzheimer’s or another form of dementia, but professionals who work with the elderly agree that history doesn’t mean a diagnosis is a foregone conclusion.
“There is no reason at all to panic or run out to get tested,” said Sharon Berz, long-term care director at the Aroostook Area Agency on Aging. “People will get scared if they have a family history, and then they themselves suddenly forget something and have a memory lapse.”
What people need to understand, Berz said, is that “benign senescent forgetting” — routine moments of forgetfulness or confusion — is something that everyone experiences from time to time.
“We all get on overload or stressed and find ourselves forgetting things,” Berz said. “If someone has a family member with dementia or cognitive impairment, they may panic if they forget where they put the car keys one day [and] jump to conclusion, ‘Oh my goodness, Grandma has Alzheimer’s, now I have it.’”
Genetic tests can’t determine if a person’s symptoms of forgetfulness or confusion are routine or a precursor to dementia or Alzheimers, according to Trenholm.
“As far as telling the future with genetic testing, we simply are not there yet and that peace of mind does not exist yet,” she said. “Yes, you can see if you are a carrier, but it’s really not telling you much beyond that.”
More important, Trenholm said, are the lifestyle choices people make now.
“We know the benefits of a healthy lifestyle when it comes to staying mentally sharp,” Berz said. “Things like eating well, increased physical activity and being around friends and family instead of staying in isolation are all beneficial.”
Wierman agrees.
“We have no cure for Alzheimer’s or dementia yet,” she said. “At some point I am confident there will be treatment, but right now, the best thing for people is to be active cognitively, socially and physically.”
But people do need to be smart about future planning when it comes to their own care.
“Long-range planning for advanced care is something we should all do as adults regardless of any fears of possible future medical diagnosis,” said Berz. “While we are healthy and mentally able, we should be planning on what is going to happen if anything bad happens to us and we are unable to make our own decisions.”
If someone is concerned about their cognitive future, Wierman recommends talking to their primary care physician and, if they are determined to get screened, consulting with a genetic counselor.
Trenholm said her organization is ready to work with individuals who are concerned about a possible Alzheimer’s or dementia diagnosis.
“We want to be as helpful as we can and make sure people get good information,” she said. “But our position is there is no need for the genetic testing.”
