55% Of Doctors Keep a Patient’s Alzheimer’s Diagnosis Secret

Although Diana Jameson suspected that her mother had Alzheimer’s disease, it took two years before a doctor would divulge that information.

“When we asked the doctor if something might be wrong, he said, ‘I really don’t think she’s experiencing any issues.’ ” The length of the appointments which lasted between 10 to 15 minutes, was about how long Jameson’s mother could carry on a normal conversation before she started repeating herself.  Jameson looked for another doctor six months later because her mother wasn’t eating or drinking.  However, the next doctor was equally evasive. So, Jameson took her mom to the ER where they kept her overnight since she was in dire need of fluids.

After shopping around for another doctor, they finally found one who conducted a rigorous series of cognitive tests and imaging scans on Jameson’s mother. The tests revealed brain shrinkage. This was the first doctor to finally say the Alzheimer’s word.

Believe it or not, over half of Alzheimer’s patients (55%) are not told about their condition, even when their doctor knows they probably have it.  These statistics are according to the 2015 facts and figures report from the Alzheimer’s Association.

Early Diagnosis is the Ethical Choice

When they are approached on the subject, the majority of doctors agree that the ethical choice is to present a patient with a clear, direct diagnosis as early as possible.  They just simply don’t always do so.  Dr. Keith N. Fargo, director of scientific programs and outreach at the Alzheimer’s Association says, “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.” It seems other don’t have the time.

“We have not adequately structured the healthcare system to take care of older adults with cognitive impairment,” said Jason Karlawish, MD, a professor of medicine, medical ethics and health policy at the University of Pennsylvania.

(To help address this problem,the HOPE for Alzheimer’s Act was introduced by four US senators. This act was introduced to provide Medicare benefits for care planning for people with Alzheimer’s. And, to provide physicians with a way to schedule a more appropriate office visit to disclose a diagnosis and discuss its implications.)

Why Keeping Secrets Can Be a Problem

“Alzheimer’s is a progressive disease, meaning it only gets worse,” says Fargo, “The best time to plan for the more difficult stages of illness is, well, ASAP. When people aren’t told about their disease, they’re robbed of that opportunity.”

Naturally, nobody wants to hear that they have Alzheimer’s disease—but, on the other hand, neither do we want to be kept in the dark about it. Research shows that people are quite able to deal with the prognosis, 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,” says Karlawish.

A major part of dealing with a problem is being able to seek early treatment.  Better outcomes are achieved with earlier treatment, whether we’re talking about flu or Alzheimer’s. Fargo says, “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. If a patient can start these medications early on, she can be held steady at a high level of functioning for longer.”

Help Could be Available Soon for Those Who are Given a Diagnosis

Currently, prevention is the focus for research and some experimental drugs have shown promise in the delay of the decline brought on by Alzheimer’s.  As a result, help may soon be available to those who have been diagnosed early of their condition.  For some who don’t receive accurate diagnosis, this help me, too late.

Jameson is one daughter who says she would have gotten care for her mother sooner if she had received an accurate diagnosis in the beginning of her mother’s illness.  However, for two years her mother’s behavior became more and more unsettling.  One instance that she recalls is when she called her mother to remind her to eat breakfast and then found milk in her fridge a few days later that had never been opened.  Another time, neighbors found her mother in their car.

“It would have relieved a lot of stress on my brother and me to be educated sooner,” she says. “The fact that she could have been in harm’s way really concerns me. We didn’t realize how far it had gone.”

Eventually, Jameson and her family brough in a caregiver to visit her mom every other day.  It grew to five days a week, then seven. Then she was moved into a care facility. A few months later, she passed away.  “It was a journey I definitely never want to go through again,” said Jameson.

Also Read: 12 Proven Health Benefits Of Galantamine

Is it the Most Taboo Diagnosis?

In the report, Medicare records and responses to the Medicare Current Beneficiary Survey of 16,000 patients were analyzed.  Whenever a patient’s doctor had submitted a claim to Medicare for Alzheimer’s-related care, that patient was questioned as to whether a doctor had informed them that they had Alzheimer’s. (If the patient was unable to answer, a family member or caregiver was asked instead.)

Of the group of patients treated for Alzheimer’s, a mere 45% said they had been informed by a doctor of a diagnosis for Alzheimer’s. By contrast, 96% of people with breast cancer had been informed of their diagnosis. Fewer patients (27%) were told about other conditions that cause dementia. This mirrors an earlier CDC report that revealed a mere 34.8% of adults over 65 with Alzheimer’s disease had been given an accurate diagnosis.

Regarding this, Jameson remarked, “It justified that I wasn’t crazy that the doctor wouldn’t tell me what’s wrong. What’s wrong with telling people they have Alzheimer’s or dementia?”