“When we asked the doctor if something might be wrong, he said, ‘I really don’t think she’s experiencing any issues.’ " Appointments lasted 10 or 15 minutes—the same amount of time Jameson’s mother could fool people into thinking she could carry on a conversation just fine, until she started the same exchanges all over again. When, about six months later, her mother wasn’t eating or drinking, Jameson sought out another doctor, who was similarly dismissive. Jameson brought her mother to the ER, where she stayed overnight, in dire need of fluids. They shopped around for more compassionate doctors until finally one conducted a rigorous series of cognitive tests and imaging scans, revealing brain shrinkage. That doctor finally said the word “Alzheimer’s.” According to the 2015 Facts and Figures report from the Alzheimer’s Association, more than half of people with Alzheimer’s—55%—are not told about their condition, even though their doctor knows they likely have it. Most doctors say they agree with what seems to us like the most ethical choice: presenting a patient with a clear, direct diagnosis as early as possible. But they simply don’t always do so, says Keith N. Fargo, PhD, director of scientific programs and outreach at the Alzheimer’s Association. Their aim is not to be immoral, but many say they don’t want to cause a patient emotional distress. That might mean they use vague terms during an appointment or avoid explaining the full prognosis. Others say they won’t tell a patient who underestimates how severe his problems are or who, as a matter of personal preference, simply would not like to know the cause of those problems. MORE: 5 Surprising Causes Of Alzheimer’s Disease Others seem not to have the time. “We have not adequately structured the healthcare system to take care of older adults with cognitive impairment,” says Jason Karlawish, MD, a professor of medicine, medical ethics and health policy at the University of Pennsylvania. (To help address this, four U.S. Senators introduced the HOPE for Alzheimer’s Act this month, which would provide Medicare benefits for care planning for people with Alzheimer’s, giving physicians a way to schedule a more appropriate office visit to disclose a diagnosis and discuss its implications.) The Problem With Keeping Secrets Alzheimer’s is a progressive disease, meaning it only gets worse, Fargo says. The best time to plan for the more difficult stages of illness is, well, ASAP, he says. “When people aren’t told about their disease, they’re robbed of that opportunity.” Certainly, no one wants to find out they have Alzheimer’s disease—but many of us couldn’t imagine being kept in the dark. Research suggests patients are quite capable of dealing with the news, too. “Once you have a name for a problem it allows for people to make sense of what’s wrong and to plan for the future,” Karlawish says. Part of forming that plan for the future is seeking treatment as early as possible. Whether it’s Alzheimer’s or the common cold, we typically get better outcomes with earlier treatment. The medications that currently exist to treat Alzheimer’s don’t slow down the progress of the disease; rather, they can hold symptoms steady for a period of time, Fargo says. If a patient can start these medications early on, she can be held steady at a high level of functioning for longer. MORE: Link Between Personality And Alzheimer’s Disease Current research is focused on prevention, with experimental drugs beginning to show promising results in delaying Alzheimer’s decline. That means crucial help may one day be available to Alzheimer’s patients—at least, those who know they need it. Without early, accurate diagnosis and clear, direct disclosure of Alzheimer’s, treatment could come too late. Jameson says it’s likely she would have gotten care for her mother sooner had she known the diagnosis. During those two years of uncertainty, her mom’s behavior grew more and more unsettling. She recalls calling to remind her mother to eat breakfast—only to find days later that the milk in her fridge had never been opened. One morning, her mom was found in a neighbor’s car. “It would have relieved a lot of stress on my brother and me to be educated sooner,” Jameson says. “The fact that she could have been in harm’s way really concerns me. We didn’t realize how far it had gone.” Jameson and her family eventually hired a caregiver to visit her mother every other day, then five days a week, then seven. In September 2012, they moved her into a care facility. She passed away in early January. “It was a journey I definitely never want to go through again,” Jameson says. The Most Taboo Diagnosis? The report analyzed Medicare records and responses to the Medicare Current Beneficiary Survey from about 16,000 people. If a patient’s doctor had submitted a claim to Medicare for Alzheimer’s-related care, that patient was then asked if a doctor had ever told them they had Alzheimer’s. The same goes for people who had received care for other specific medical conditions, such as breast cancer. (If the patient was unable to answer, a family member or caregiver was asked instead.) Of those people who had been treated for Alzheimer’s, just 45% said they had been told by a doctor that they had the disease. In contrast, 96% of people with breast cancer had been told their diagnosis. Even fewer people—just 27%—had been informed about other conditions that cause dementia. The findings echo an earlier CDC report that discovered only 34.8% of adults over 65 with Alzheimer’s disease were aware of their diagnosis. Reading this news hit home for Jameson. “It justified that I wasn’t crazy that the doctor wouldn’t tell me what’s wrong,” she says. “What’s wrong with telling people they have Alzheimer’s or dementia?” Before you ask: No, this is not simply because the patient with Alzheimer’s doesn’t remember the conversation with their doctor. In fact, Fargo says, people with more advanced Alzheimer’s were actually more likely to say their doctor had told them about their diagnosis. Yes, caregivers were more likely to report having been told of the patient’s Alzheimer’s or dementia diagnosis than the patients themselves. But even the number of caregivers who had been told of the diagnosis was troublingly low, at just 58%. The only way to be absolutely certain someone has Alzheimer’s is by analyzing brain tissue during an autopsy. But trained specialists can be pretty sure. Typically, they’ll administer memory tests, record family history, and ask the patient—and usually someone who knows them well—questions about changes in personality, memory, and thinking, as well as about their ability to perform daily activities like driving or getting dressed. These tools help them an accurate diagnosis about 90% of the time, Fargo says. Today’s aversion to Alzheimer’s diagnosis disclosure is reminiscent of the way doctors skirted around cancer in the 1950s and 60s, he says, when even just uttering the word was taboo. A small group of physicians surveyed at the time said they thought telling their patients they had cancer would cause unnecessary anxiety or lead to depression, according to the Alzheimer’s Association report. Obviously for cancer the times have changed, Fargo says, but when it comes to Alzheimer’s, “it’s not yet where it needs to be.” MORE: 8 Ways To Prevent Alzheimer’s Disease
