PEORIA — When someone you love starts showing signs of dementia, you may discover that it’s very challenging to get a definitive diagnosis.
“It’s a huge problem. The ability to diagnose is very poor among physicians, and the problem is widespread,” said Dr. Julia Biernot, the only neurologist working in central Illinois who specializes in memory disorders.
It’s a nationwide issue that has been widely discussed since the Alzheimer’s Association published a survey about it in 2015. Family physicians lacking the skills to determine if the patient is indeed suffering from some sort of dementia may shy away from making a diagnosis early in the disease, and many neurologists don’t have the specialized training it takes to pinpoint the specific condition causing the patient’s memory loss and confusion.
A big part of the problem is that there are no diagnostic tests that lead to a definitive diagnosis. Some tests can be helpful in diagnosing certain types of dementia, but Biernot usually arrives at a diagnosis by interviewing both the patient and family.
“At the end of the day, it’s a clinical diagnosis that’s made after an hour-and-a-half-long interview. It’s very laborious,” said Biernot, who lives in Baltimore and sees patients at OSF Illinois Neurological Institute via telemedicine.
Family members are typically the best source of information because dementia patients often can’t remember or properly relate symptoms. “I have had patients who tell me that they are completely fine, and I get a totally different story from a family member,” she said.
Another issue fueling the problem is the belief among both patients and physicians that, because there’s no cure, it’s not important to pinpoint the exact cause.
“If I were a patient, I would want a correct diagnosis. From the perspective of the family, I would want to know if there were genetic components, and from the patient’s perspective, the diagnosis affects the treatment,” said Biernot.
The Alzheimer’s Association also recommends getting a definitive diagnosis.
“It gives you peace of mind in the sense that you know the exact diagnosis, you know what your loved one is dealing with,” said Oliver Kah, manager of care consultation for the Peoria office of the Illinois Chapter of the Alzheimer’s Association. “Without a diagnosis, there is a level of anxiety because you are dealing with the unknown.” A diagnosis also allows families to plan for the future, said Kah.
While there’s no cure for Alzheimer’s and most forms of dementia, there are treatments that can help, including both medications and strategies caregivers can use to deal with symptoms, said Biernot. Without a good diagnosis, treatments may be used improperly. Biernot said she frequently sees patients who have been given erroneous information, and she urges people to see a specialist.
“If you have a heart condition or cancer, you see a specialist — why wouldn’t you do that for dementia?”
A matter of safety
Only 45% of people being treated for dementia-related symptoms had been told they had dementia by their doctor, according to a study by the Alzheimer’s Association published in 2015. Researchers noted that with other serious diagnoses such as breast, colorectal, prostate and lung cancer, the diagnosis was more readily given, with 90% of patients being told their diagnosis.
Multiple reasons have been given for why so few patients and family members are aware of a dementia diagnosis, including the fact that some dementia patients simply may not remember being told. Family members may also be in denial, thinking the changes in their loved one are normal aging.
But according to Dr. Halima Amjad, assistant professor of medicine in the Division of Geriatric Medicine and Gerontology at Johns Hopkins University School of Medicine in Washington, D.C., the issue goes deeper than that.
“For a lot of clinicians, there is just discomfort with making the diagnosis of dementia and determining whether a patient makes the clinical criteria for dementia,” she said. “There is certainly not enough training and knowledge.”
When her father was showing signs of early onset dementia, Amjad, who had not yet become a specialist in the field, told her mother it probably wasn’t dementia because he was aware of his symptoms.
“That’s what we are taught in medical school, yet there are patients who recognize their symptoms, and may even notice them before their physicians do,” she said.
Some physicians fear upsetting their patients when there is little they can do to help.
Amjad said, “There is this lack of perceived benefit from making a clinical diagnosis, saying, ‘There’s not much we can do, so what’s the point of making the person feel depressed, anxious and upset?’”
There are also issues within the medical system that contribute to the problem.
“A big barrier is a lack of time. If you are in a primary care clinic and you have 15 minutes per visit, 15 minutes is just long enough to do bedside cognitive testing, let alone explain what the diagnosis means,” said Amjad. “Even in the Memory Center, where I’m given 30-45 minutes to spend with a patient, it’s often not enough to talk through a serious life-changing diagnosis.”
There is also limited access to specialists, as well as community resources and support.
“I don’t think we, as a country, have the infrastructure we would really need to do the best job taking care of this patient population,” said Amjad.
Because a dementia diagnosis is upsetting, Amjad sometimes takes a gentle approach when relating the bad news by not immediately using specific words. She works up to the full diagnosis over the course of a few visits until she has gained the patient’s trust. In those cases, it’s important family knows the full diagnosis. Ultimately, the pain of receiving a diagnosis is less important than minimizing the damage that can be done if a patient continues functioning in the world without a full understanding of their limitations, said Amjad.
“There are bad things happening to people with undiagnosed dementia that could be prevented through earlier diagnosis, awareness and support,” she said.
People with symptoms of dementia lacking a formal diagnosis are twice as likely as those with a formal diagnosis to do potentially unsafe activities like driving, cooking, managing finances and medication, according to a study led by Amjad that was published in the Journal of the American Geriatric Society in 2016.
Wealth decrements are also a frequent problem for older adults struggling with dementia. According to Peter Lichtenberg, director of the Institute of Gerontology and a professor of psychology at Wayne State University, undiagnosed dementia patients are at greater risk for financial exploitation.
“It’s the crime of the 21st century, according to many people in the field,” he said. “Financial exploitation of older adults — it’s open season, and there’s no sign of abatement.”
While people are most likely to be taken advantage of by someone they know, many scams are perpetrated by strangers via phone or computer. A caller says, "Congratulations! You won the Jamaican lottery, but we need $2,000 to process your winnings," or claims to be a representative from the IRS needing immediate payment of back taxes. The grandparent scam is also common — a caller claims to be a grandchild in trouble and needing money. The tech scam, where someone calls or emails claiming "there is a problem with your computer," is also very common. The "problem" can be fixed for $500, and when the scammer is given control of the computer, he steals the victim’s personal information.
“There are hundreds of scams, and they are evolving all the time,” said Lichtenberg.
The Alzheimer’s Association is actively working to make the diagnostic process easier for dementia patients. One of the association’s major goals is to educate primary care doctors so they become more confident in both determining and relating a diagnosis, said Terrianne Reynolds, director of medical research activities for the Alzheimer’s Association. Once that diagnosis is given, patients should be referred to a specialist, who will determine what type of dementia the patient has and help them manage symptoms and find support.
Even handled well, a proper diagnosis typically doesn’t happen immediately.
“It takes up to two years to get an accurate diagnosis,” said Reynolds. The diagnosis can also change as the disease progresses and new symptoms surface, so continued care with a specialist is important.
As part of the effort to better educate primary caregivers, the Alzheimer’s Association has created online tools and last year launched a pilot program connecting dementia care experts and health care providers. The program is aimed at helping primary care providers better diagnose, care and support individuals with Alzheimer's and related dementias, according to information in the Alzheimer's Association 2019 "Facts and Figures Special Report."
Recognizing the problem, primary care providers are asking for help, according to a survey conducted by the Alzheimer’s Association.
“Nearly all of the surveyed physicians wanted more guidance on conducting an assessment, which they viewed as important,” said Reynolds. “They also wanted more guidance on how to have the discussion after the exam.”
And to address the issue of compensation, in 2018 new billing codes were instituted to allow for the longer office visits needed for an assessment and the difficult conversations that typically follow.
“These are tough conversations, but if it was diabetes or cancer, doctors would be giving the diagnosis,” said Reynolds. “And as a family member, you would want to have that diagnosis.”
Leslie Renken can be reached at 686-3250 or firstname.lastname@example.org. Follow her on Twitter.com/LeslieRenken, and subscribe to her on Facebook.com/leslie.renken.