Written Off: The Consequences of Dementia Misdiagnosis

Numerous conditions can mimic the symptoms of Alzheimer’s disease and other types of dementia, leading to misdiagnosis and risks for older adults.

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“I’m just an old person, and they don’t care,” Carol “Peaches” Conoyer told The Epoch Times. “That’s just the way I felt.”

The 86-year-old resident of St. Peters, Missouri, spent months in and out of hospitals and assisted living centers following a series of seizures that were ultimately diagnosed as dementia.

However, her daughter, Darlene Conoyer Fischer, didn’t believe the diagnosis. So she began fighting a system that she says too easily writes older people off as having dementia without searching for other answers.

Ms. Fischer told The Epoch Times that at least one neurologist, an internist, several nurses, and hospital staff at two different hospitals told her that her mother should be put in memory care because she had dementia.

Through research and many questions, Ms. Fischer discovered her mother was overmedicated with the anticonvulsant drug Keppra, or levetiracetam, which can cause side effects such as changes in mood or behavior, restlessness, and memory issues. When the medication changed, so did her mother.

Certain medications—as well as underlying medical conditions, such as urinary tract infections, paraneoplastic syndrome, and normal pressure hydrocephalus—can lead to a misdiagnosis of dementia, as more patients and their families are finding out.

From Dementia Diagnosis to Recovery

Ms. Fischer said her mother was on 23 medications when she went into hospice. They took her down to seven. She graduated from hospice a few months later.

Ms. Fischer said that today, her mother is “living happily and independently.”

“I just talked to her and she said she went to the gym to work out,” she said. “This is a person who was written off for death not long ago.”

She said it’s a vicious cycle. Older people are confined to their beds or chairs in hospitals or assisted living centers because they either can not physically get up or are a fall risk. “They will scream for help, and no one comes,” Ms. Fischer said. “So then, because of how they act, they are labeled demented. And it sticks.”

Shannon Hohlt Yuede and her mother’s experience was similar. Following hospitalizations and rehab stays for femoral bypass surgery, strokes, and urinary tract infections, Ms. Yuede’s mother, Lyn Cocks, suffered severe delirium and confusion.

Ms. Yuede was told her mother had dementia by health care workers who came to the conclusion after Ms. Cocks failed the five-word memory test used to check for signs of memory loss.

“I kept telling them she didn’t have dementia. She had aphasia. She knew the words. She just couldn’t say them. But no one would listen to me,” Ms. Yuede explained.

Like Ms. Conoyer, Ms. Cocks was put on hospice, where she went from taking 35 pills per day to 12. And like Ms. Conoyer, she graduated from hospice within several months.

“My mom was on medications to fix the symptoms of other medications. When she got off of all of that, her aphasia subsided. She had no signs of dementia. She was her spunky self,” Ms. Yuede said.

Older Adults Need an Advocate

Ms. Conoyer said she would not be alive today had her daughter not advocated for her. “I had so much medicine in me, I was just existing. I trusted the doctors and nurses. But I was wrong. If you don’t have an advocate, you’re in trouble.”

Ms. Yuede shared a similar message. “When older people become unable to advocate for themselves, they just resolve to do whatever the doctor says,” she said. “When they’re told their situation is hopeless, their mind says, ‘This is what’s going to happen,’ and their body just follows.”

Ms. Yuede also pointed to the importance of having a doctor to get to the root cause of mental decline. The Alzheimer’s Association reports that some 20 U.S. states have been termed “dementia neurology deserts,” which means that they are projected to have fewer than 10 neurologists per 10,000 people with dementia by 2025.

The shortage doesn’t just apply to neurologists. According to the Alzheimer’s Association, the number of geriatricians will need to triple by 2050 to keep up with current diagnosis projections.

Dr. Lee Peter Bee is just one geriatrician. But along with being a physician, consultant, and educator, he says he’s an advocate for older adults who are underserved in health care. Because of him, one 80-year-old woman has returned to her family as an active, mentally intact mother, grandmother, and great-grandmother.

After she went through months of hospital and rehab stays following bouts with congestive heart failure, the woman and her family were told by several health care providers, including a neurologist, that she had dementia.

As it turned out, the woman had paraneoplastic syndrome that arose as a consequence of hypercalcemia, an underlying neoplastic disease that causes calcium levels in the blood to rise. The calcium can weaken muscles and bones and interfere with how the heart and brain work.

“She had a metabolic cause, a tumor that leaches out calcium from the bones,“ Dr. Bee said. ”Then the calcium goes into the blood and interferes with electrolytes, walking, and neurocognitive activities. The symptoms looked like dementia, but it was something completely different.”

Dr. Bee told The Epoch Times that misdiagnosis happens all too frequently, often from overmedication. Such has been the case with Parkinson’s patients he’s treated who were overmedicated to the point of psychosis, when in actuality, they had only an essential tremor.

“Something can have similar symptoms but completely different causes,” Dr. Bee said.

Medical Conditions Can Mimic Dementia

The Alzheimer’s Association says clinicians use diagnostic tools combined with medical history and other information, including neurological exams, cognitive and functional assessments, brain imaging, and cerebrospinal fluid or blood tests, to make a diagnosis.

Until recently, dementia diagnosis meant some understanding of mental decline, but it came without any treatments to change the course of the disease.

The National Institutes of Health says researchers have now pushed the timeline for dementia intervention earlier and earlier. Interventions used to begin at the stage of full-blown Alzheimer’s, but now—thanks to new drugs, better imaging biomarkers, and consistent evidence that many dementias begin in the brain at least a decade before symptoms appear—treatments can begin during dementia’s precursor, called mild cognitive impairment. In some cases, people without any symptoms of cognitive decline can potentially be treated before symptoms appear, thereby staving off dementia altogether or significantly slowing its progression.

The hope of scientists and patients alike is that dementia can be identified and treated earlier. In fact, some scientists, such as Harvard neurology professor Rudolph Tanzi, want doctors to be able to manage Alzheimer’s disease in the future like they do heart disease now, by treating it way before symptoms appear.

However, the current norm is that doctors rely on assessments based on current symptoms, and many of those can overlap with other conditions or occur as the result of medication—resulting in misdiagnosis of dementia.

A medication-wide association study of 17,000 dementia cases among half a million participants found that of 744 medications, almost a third were associated with dementia.

Two common classes of drugs have been linked to an increased risk of dementia in large population studies. These include benzodiazepines, a category that includes medications for anxiety and sleeping pills, and anticholinergics, a group that encompasses medications for allergies and colds, depression, and other diseases.

In addition, the authors of a paper on geriatric cognitive decline reported that elderly patients taking at least five medications are at increased risk of mild cognitive impairment and dementia. The odds of developing dementia were eightfold higher in people with more than one drug interaction. The authors emphasized the need to reduce medication overprescription.

According to the National Institute on Aging, dementia-like symptoms, common in many other conditions, can make it difficult to accurately diagnose the disease. Some of these include Huntington’s disease, vitamin deficiencies, and urinary tract infections.

Certain causes of dementia symptoms can be halted or even reversed with treatment.

Previous Studies Warned of Diagnostic Errors

An estimated 6 million Americans are currently living with Alzheimer’s. This number is projected to rise to nearly 13 million by 2050.

But are these projections correct? It’s difficult to determine how many people are diagnosed with dementia and Alzheimer’s who don’t actually have the diseases, though prior studies have warned of the possibility of misdiagnosis.

For example, one 2013 study compared individuals whose clinical diagnosis of Alzheimer’s disease matched neuropathologic results at autopsy with those whose didn’t and assessed the extent of potentially inappropriate or unnecessary medication use among misdiagnosed patients. They found misdiagnosis rates of 12 to 23 percent, which could be due in part to conditions with symptoms similar to Alzheimer’s disease. Some of those conditions are treatable and even reversible.

Australian researchers in a 2022 study evaluated the frequency and nature of diagnostic errors in 16 conditions prevalent in older patients, including dementia. After reviewing 938 studies published between 1993 and 2014, they held that misdiagnosis “exposes older patients to increased risk of inappropriate or omitted investigations and treatments, psychological distress, and financial burden.”

They reported diagnostic error rates of more than 10 percent for both over- and underdiagnosis in dementia. Their findings call for clinicians to be more thorough in order to prevent misdiagnosis and ensure proper treatment.

Dr. Bee and Dr. Tanzi said they too recommend finding the right clinician who is compassionate toward their patients and takes the time to dig deep enough to determine what is actually going on with each individual.