Alzheimer's is one of the most common and serious diseases of aging, yet many older adults with memory issues are not telling their doctors about their struggles.
That's according to a new report from the Alzheimer's Association that focuses on whether doctors and patients are discussing early warning signs of the disease. The answer, often, is no.
In focus group discussions, the association found that older adults who'd been noticing problems with their memory and thinking often said they did not want to bring the subject up with their doctor.
Some cited fear of getting a wrong diagnosis or being put on unnecessary treatments. At the same time, people often feared a correct diagnosis of dementia.
It's understandable that no one wants to hear that news, said Dr. Nicole Purcell, senior director of clinical practice for the Alzheimer's Association.
But the reluctance is concerning, she added, because getting to the bottom of people's thinking and memory problems is essential. In some cases, those issues are not caused by dementia, but by a reversible medical condition such as sleep apnea or a thyroid disorder.
Even if a person is in the early stages of Alzheimer's, Purcell said, new treatments are becoming available that can slow the disease down.
Within the past two years, the U.S. Food and Drug Administration has approved two drugs that target the underlying biology of the disease: They help clear the brain of abnormal protein clumps called amyloid "plaques" — considered the hallmark of Alzheimer's.
Those medications, aducanumab (Aduhelm) and lecanemab (Leqembi), are not yet widely accessible: Medicare, at least for now, is not paying for them unless the patient is enrolled in a clinical trial.
That's clearly a huge barrier, Purcell said, as the medications carry a hefty price tag outside of trials. Aduhelm costs $28,200 a year, while Leqembi carries an annual price tag of $26,500.
Still, early diagnosis of Alzheimer's is critical for many reasons, she and other experts said. Medicare coverage decisions could change in the near future, for one.
But beyond that, "people need care," said Dr. Howard Fillit, chief science officer for the nonprofit Alzheimer's Drug Discovery Foundation in New York City.
Patients, he said, need help with planning for the future, managing coexisting health conditions and medications, and navigating daily challenges. Their family caregivers also need guidance, Fillit pointed out.
For all those reasons, he said, an early, accurate diagnosis is "critically important."
The new report, released March 15, is part of the Alzheimer's Association's annual Facts and Figures update -- an overview of how the disease is affecting Americans and the health care system.
The report is based on focus group discussions, including with people who had "subjective cognitive decline" — meaning they'd noticed growing problems with their memory or thinking abilities.
Many were reluctant to talk to their doctor about it, though.
"Often, they said they'd rather talk to a family member or friend, to see what's 'normal' for their age," Purcell said.
In addition, Black, Hispanic, Asian and Native Americans were particularly wary of being put on medications, and preferred a "holistic" approach to their thinking and memory issues. Black and Native American participants also cited racism in the medical field as a concern.
Doctors, meanwhile, are not broaching the topic, either. Focus groups with primary care doctors revealed that they usually depend on family members to bring any concerns to them.
One reason, Purcell said, is that primary care providers are dealing with so much — seeing older patients who often have multiple physical ailments — that any proactive discussion of brain health falls by the wayside.
But doctors also worry that if they do suspect a patient is in early cognitive decline, they will have nowhere to send them: Specialists such as neurologists and geriatricians are in short supply in many areas of the United States, Purcell explained.
It all highlights a central issue: While everyone wants people to tell their doctor about any thinking and memory problems, getting a definitive diagnosis can be tough.
Diagnosing mild cognitive impairment — early symptoms that may or may not progress to dementia — is challenging, said Dr. Martin Sadowski, a professor of neurology and psychiatry at NYU Grossman School of Medicine in New York City.
There are objective tests that can pinpoint whether symptoms are being caused by early Alzheimer's, including brain scans and tests of the cerebral spinal fluid that detect amyloid levels. Those tests are, in fact, necessary for people to qualify for the new amyloid-clearing drugs, Sadowski noted.
The problem, he said, is that even if people can get specialist care, insurance often does not cover those expensive tests.
That said, Sadowski called himself "a big proponent of early diagnosis."
He noted that, particularly for relatively younger people, a common culprit behind milder impairment is sleep apnea -- a highly treatable condition.
Fillit added that, even in people with dementia, treating additional conditions like sleep apnea or vitamin B12 deficiency can improve symptoms.
Plus, Sadowski said, while there are currently barriers to objective tests and new drugs, the situation is evolving.
Finally, there are numerous ongoing clinical trials testing new treatments for Alzheimer's. For anyone who might want to enroll, Fillit said, a definitive diagnosis is a must.
The approved amyloid-clearing drugs are by no means the answer to Alzheimer's. Based on the lecanemab trial, Sadowski said, it slowed patients' decline by about 30% over 18 months, on average.
"We don't know about the long term," he noted.
Both drugs also carry a risk of brain swelling or bleeding.
But there are many types of Alzheimer's treatments in clinical trials right now, Fillit said, and most target underlying processes other than amyloid buildup. It's thought that taking aim at the disease from multiple angles will ultimately be most effective.
"Research into Alzheimer's disease didn't start until about 40 years ago," Fillit said. "And now it's paying off."