Medical researchers have made giant leaps in diagnosing Alzheimer’s disease, which could make it possible to detect the illness long before memory and cognitive problems show up.
There is no cure for the fatal, degenerative disease, and it remains one of the diagnoses most feared by patients. But researchers and patient advocates say it’s still worth facing their fears and getting tested.
Jose Belardo of Lansing, Kansas, spent most of his career in the U.S. Public Health Service, and he worked on the frontlines of disasters in places like Haiti, Colombia, Nicaragua and the Dominican Republic.
His wife, Elaine, remembers that at home, he was the soft-hearted parent who sneaked after-dinner treats to their three kids.
“So much so that when he was deployed, my son, one night he was just crying and he’s like, ‘Why is the parent with empathy and mercy deployed?’” Elaine says with a laugh.
Jose was also unfailingly reliable. So when he forgot their wedding anniversary two years in a row, both Elaine and Jose started to worry.
“We recognized something wasn’t right and pretty much attributed it to being overworked and tired,” Elaine says.
Then last year, when Jose was 50 years old, he got an evaluation at the Walter Reed Medical Center, which included an amyloid PET scan.
His diagnosis: early onset Alzheimer’s disease.
“You’re fairly stunned upfront,” Elaine says. “Your life is upended. You’re shocked. Frightened. Hopeless.”
An Alzheimer’s diagnosis can be so scary that many people would rather dismiss memory problems or other symptoms than investigate them. As a result, Alzheimer’s experts think only about half of cases are actually diagnosed.
But that may soon change. Researchers are making progress on measuring Alzheimer’s biomarkers like beta amyloids that could potentially identify the disease decades before symptoms appear.
John Morris, an Alzheimer’s researcher and professor of neurology at Washington University in St. Louis, thinks we may be at the start of a revolution in the field.
“We’re trying to treat people prior to the stage of dementia, prior to the stage where memory and thinking are affected, in an effort to delay the loss of memory and thinking ability or even prevent it,” Morris says.
Biomarker tests are not commonly available yet, but it’s likely they will be soon.
Alzheimer’s typically has been diagnosed by observing a patient’s behavior and running cognitive tests. That can be pretty inexact and lead to misdiagnoses or other conditions going undetected.
“Not all dementing illnesses are Alzheimer’s disease,” Morris says. “There are many other illnesses, some of which can be appropriately treated. For example, sometimes a low thyroid hormone level can produce a dementia-like state, and that can be easily treated with thyroid replacement therapy.”
A study by the Alzheimer’s Association shows that, with more accurate tests, early diagnosis could save $64,000 per patient over the course of a lifetime.
And since the new diagnostic methods may make it possible to detect Alzheimer’s at an earlier stage, patients can be more involved in planning for their future. That can go a long way to reduce the stress and emotional toll exacted by the disease on them and their loved ones.
“As long as they are able to interact with their family members about these lifestyle decisions, then I think they’re still a contributing member of that family unit, and they still have a lot to offer to the family, and the family still has a lot to offer to them,” Morris says.
After Jose Belardo’s illness was diagnosed, the family rushed to get his affairs in order. They got in touch with the Alzheimer’s Association, which provided support groups and other help.
Elaine says that before long, the shock subsided.
“What I would say is after you get a diagnosis of something that is incurable and progressive and perhaps even aggressive, pause. And breathe. And think about where the person is right at that moment. Because at that moment, Jose was not dying. And at this moment, Jose is not dying,” Elaine says.
Jose admits he gets overwhelmed at times thinking about the disease, but he tries to not let distress keep him from living in the moment.
“I got responsibilities, man. I can’t go away. I got kids. I got graduations coming up. I got all this stuff coming up. I’m not going to let Alzheimer’s take that away from me. That’s for sure.”
Alex Smith is a health reporter for KCUR. You can reach him at firstname.lastname@example.org.