Why Does Dementia Take so Long to Diagnose?

Catching dementia early can mean better treatment, planning, and peace of mind for families.

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Jennifer Fink’s mother began slipping up at work, but it didn’t seem alarming at first. The family ran a photography business, and she occasionally forgot to write due dates or left out key directions on customer orders. However, the problems grew until one day her mother couldn’t recognize her own handwriting on a large photo restoration order.

“That was a fun day,” Fink recalled sardonically in an interview with The Epoch Times. At 53, her mother seemed far too young for age-related decline, so the family chalked it up to distraction or stress.

The lapses often showed up toward the end of her workweek. While the family found it frustrating, suspicion of dementia wasn’t even on the table.

Stories like this are common. A meta-analysis of 13 studies involving more than 30,000 people, with ages at onset ranging from 54 to 93, showed that it takes about 3 1/2 years on average to receive a dementia diagnosis after the first symptoms appear. For younger people or those with frontotemporal dementia, the delay is even longer—averaging more than four years.

Early dementia signs often look like normal forgetfulness or stress, and with gaps in health care, families may wait years for a diagnosis.

Delayed Diagnosis

Despite the growing global burden of dementia, most people living with the condition never receive a formal diagnosis. Research shows that only 20 percent to 50 percent are diagnosed in wealthier countries, with rates even lower in lower-income regions. With such steep growth ahead, health systems that already struggle with delays in diagnosis and care will face even greater pressure.

According to Dr. Barbara Sparacino, a triple board-certified adult and geriatric psychiatrist, several barriers contribute to these delays. Patients may seem fine during short visits, masking underlying difficulties. Doctors often work separately instead of together—for example, neurology, psychiatry, and primary care may each focus on their own area without sharing observations, so no one connects the dots early on. Stigma can also make families minimize symptoms.

“All of these factors push honest conversations and evaluation further down the road,” Sparacino told The Epoch Times.

At first glance, many families believe dementia symptoms appear suddenly. However, as Sparacino said, with a careful history, subtle changes can usually be traced back “three to five years.” Those early shifts, if recognized, could offer a window for earlier interventions and planning—making awareness and screening all the more critical.

Normal Aging–or Not

In the early stages of dementia, neurons lose connections, and proteins such as amyloid and tau interfere with communication.

“This can cause mild problems like word-finding difficulty or trouble multitasking, which are often mistaken for normal aging,” Dr. Luke Barr, a board-certified neurologist and chief medical officer at SensIQ, told The Epoch Times.

A systematic review of 32 studies spanning 13 countries found that, along with common barriers such as denial, stigma, fear, lack of awareness, wanting to protect independence, and limited access to help, seeing symptoms as “normal aging” also played a role in delayed diagnosis. Caregivers often struggled to recognize changes and find support. On the other hand, recognizing symptoms as unusual, having prior knowledge or health care contacts, and receiving support from family or community encouraged people to seek help.

Fink, who said her mother wasn’t diagnosed with dementia until 11 years later, recalled how easily the early signs were overlooked.

After a serious motor vehicle accident in December 1991, Fink’s mother appeared fine at first, but by 1995 or 1996, there were small changes that Fink only recognizes in retrospect.

“At the time, we thought it was menopause,” she said.

It wasn’t until 2008, when her mother was rejected as a potential kidney donor for her father because of cognitive impairment, that the extent of her decline became clearer.

“Many of the warning signs could just as easily be misinterpreted as anxiety, undiagnosed ADD [attention-deficit disorder], menopause, or stress,” she said.

Some of the earliest signs aren’t just memory lapses, Sparacino said. They are subtle changes in judgment, personality, or day-to-day functioning. Families might notice a parent who was once meticulous with finances suddenly making unusual spending choices, or someone who’s always been social beginning to withdraw. Repetition—such as asking the same question again and again—often gets noticed, but the quieter shifts, such as disorientation in familiar places, difficulty following conversations, or losing initiative, tend to slip under the radar.

Younger-Onset Dementia

Dementia is considered younger-onset when it develops in people under age 65. Frontotemporal dementia, which affects the brain’s frontal and temporal lobes, usually appears between ages 45 and 65, although it can occur at any age.

Several types of dementia fall under the younger-onset category. For example, Alzheimer’s disease often begins with memory problems, while frontotemporal dementia, vascular dementia, and Lewy body dementia can also develop before age 65.

“Younger-onset dementia often shows up less as memory loss and more as personality or behavior changes,” Sparacino said. “In frontotemporal dementia, someone may become impulsive, lose empathy, or act ‘out of character’ long before memory is affected. Because these shifts can resemble psychiatric issues, diagnosis is often delayed.”

Insights from a 2022 study published in Brain showed that psychiatric symptoms in frontotemporal lobar degeneration depend on where and how heavily abnormal proteins accumulate in the brain. The study also showed that other brain changes—such as those seen in Alzheimer’s disease or Parkinson’s disease—may affect how the condition appears in each person.

In support of these findings, a 2023 case report described a 53-year-old woman who was initially diagnosed with bipolar disorder after showing social withdrawal, impulsive behavior, forgetfulness, and inappropriate actions. Later brain scans revealed damage in her frontal and temporal lobes, leading to a diagnosis of frontotemporal dementia.

“Biological differences matter a lot,” Barr said. “Because the symptoms present so differently, it can take longer to recognize what’s really going on and make an accurate diagnosis.”

Reduce Diagnosis Delays

Blood tests that measure abnormal proteins, along with imaging tools that show brain changes, could help detect different types of dementia earlier, he said.

“Some are already available, like [positron-emission tomography] PET scans and spinal fluid analysis, but they can be expensive or invasive,” Barr said.

Blood tests could detect Alzheimer’s disease with 88 percent to 92 percent accuracy, according to a 2024 study published in JAMA Network that involved more than 1,200 patients. By comparison, primary care physicians correctly diagnosed 61 percent to 73 percent of cases on their own, but using the blood test raised accuracy to 91 percent, showing its potential for earlier detection.

Research shows that while some standard checks are common, many valuable diagnostic tools are still underused. In a systematic review published in August that examined more than 650,000 people with dementia aged 67 and older, Medicare data from 2015 to 2020 showed that about 72 percent had blood tests, about 54 percent had brain scans such as CT or MRI, but only 2 percent had spinal fluid tests. Advanced scans, such as PET, were used in less than 1 percent of cases—showing that many effective ways to detect dementia early are still largely overlooked.

Cerebrospinal fluid (spinal tap) and PET tests are usually available only at specialized clinics, not in most primary care settings. All of these tests are covered by Medicare, but coverage can vary depending on the specific test and clinical need.

According to Sparacino, three strategies stand out for catching dementia early:

• Screen Routinely: Conduct cognitive screening in older adults, just as clinicians check blood pressure or cholesterol. Too often, clinicians only look when the decline is obvious, but by then, subtle changes may have been building for years.
• Train Clinicians: Help providers recognize red flags such as executive-function changes, loss of initiative, or behavioral shifts.
• Collaborate Across Specialties: Encourage psychiatry, neurology, and primary care to share information instead of working in isolation.

For caregivers, if you’re concerned, start keeping a notebook or journal with the date, time, what happened, and why it worried you. In a perfect world, you might not notice a pattern and can stop worrying. However, more often, a pattern will emerge, and your notebook full of observations can serve as valuable evidence to share with the doctor.

Fink noted that, with her grandmother already living with vascular dementia, her mother had been determined not to “end up like her” and had avoided the testing that might have provided clarity.

Fink’s mother was showing two or three early signs of Alzheimer’s disease.

“Looking back, I wish I could take her signs into today and recognize that forgetting to fill out customer orders so someone else could finish the job was a warning sign,“ Fink said. ”With today’s blood tests and early treatments, the whole journey could have been a lot easier.”