Last year, a bank officer phoned Kelli Brown’s brother with a concern: a lot of money was going out of their 87-year-old father’s bank account.
Their father, a retired accountant, lived alone in Cincinnati. He seemed to be functioning well on his own, continuing to drive and golf twice a week. But when asked about the account, their father explained he’d won $3 million in the Publisher’s Clearinghouse Sweepstakes. He was paying the taxes so he could claim his prize.
“This scammer had befriended him, and my dad fell for it, hook line and sinker,” Brown said. “He was taking money out of his account to buy gift cards and then sent the codes to the scammer.”
Efforts to convince him this was a scam didn’t work. He continued sending money, and the family was powerless to stop him. Ultimately, he lost $75,000—most of his life savings.
“He kept telling us, ‘No, I’ve won this money, you guys just don’t understand how the process works,’” Brown said.
Finally, they persuaded their father to undergo a neuropsychiatric exam, which revealed he had advanced, stage 5 Alzheimer’s disease with dementia. Neither his physician nor the family had noticed any clues.
“He had been compensating extremely well,” Brown said.
A Common Tragedy
The Brown family’s situation is not uncommon. Only 50 percent of all dementia cases are ever medically diagnosed.
And many diagnoses come too late—too late to protect the older adult from scams, to make plans for their future or to start treatment that could slow the progression of the disease.
“It’s a tragedy when I see patients presenting to me who are already in the moderate to severe stages of Alzheimer’s, where we can only offer palliative or comfort care,” said David Weisman, MD, with Abington Neurological Associates in Abington, PA. “It’s a tragedy because now we have a disease-modifying therapy that can slow the disease.”
Why aren’t more people diagnosed sooner? Signs of cognitive changes in an older adult can be easily missed or dismissed as normal aging. In some cases, the family may know the older adult has cognitive impairment but, assuming nothing can be done, they don’t pursue a diagnosis. And few primary care physicians (PCPs) perform dementia screening on a routine basis.
Health care leaders are taking note. Programs like Dementia Care Aware in California are working to encourage and train providers to perform screening earlier and more proactively for older patients.
“Dementia is incredibly common, affecting as many as 30 to 50 percent of people over age 85, and there are a number of programs, like ours, where the goal is to identify people with dementia much earlier,” said Anna Chodos, MD, a geriatrician and principal investigator of Dementia Care Aware, which aims to improve detection in older adults with Medi-Cal benefits.
Sooner, Not Later
Experts say sooner is always better for a dementia screening.
For one thing, a screening as part of an overall checkup could rule out dementia and avoid needless suffering and worry, according to Ambar Kulshreshtha, MD, associate professor, Department of Family and Preventive Medicine, Emory University School of Medicine.
“Sometimes what looks like dementia might be a treatable condition, like a urinary tract infection, thyroid disease, depression or the result of medication interactions,” he said. “These can mimic cognitive impairment.”
Some medications, like sleep meds, sedatives and anticholinergic drugs (used for a variety of conditions from overactive bladder to chronic obstructive pulmonary disease), can temporarily impair cognition.
“It’s important to report concerns about cognitive loss so that your doctor can rule out other causes that might be easily treated,” Kulshreshtha said.
A later diagnosis may mean it’s too late for a patient to benefit from newer medications that can slow the progression of disease, such as Leqembi (lecanemab-irmb), a drug approved by the FDA in January 2023 for the treatment of Alzheimer’s. (Leqembi is not prescribed for other types of dementia, such as vascular, frontotemporal or Lewy body.)
“This is the holy grail that we’ve been hoping for and waiting for forever: a disease-modifying treatment,” said Andrew Ferree, MD, a neurologist in Milford, MA, and an Alzheimer’s researcher. “If the patient has Alzheimer’s, you want to catch that as absolutely early as possible.”
When dementia goes unrecognized, family stress and resentment can build up for years.
Ferree cited a common saying in stroke neurology: “Time is brain.” For a patient having a stroke, the sooner they’re treated, the more brain function is likely to be preserved.
“The same can be said for Alzheimer’s now,” he said. “The sooner you get that diagnosis and see if you qualify for that treatment, the more likely it could change everything.” For those with other types of dementia, clinical trials of experimental medications can offer hope, but only if the patient is diagnosed.
A delayed diagnosis may also carry a psychological cost, according to Weisman. By the time dementia is diagnosed, he said, resentment and stress may have already been building among family members for years.
Diane Ty, MBA, managing director of the Milken Institute Future of Aging, saw that in her own family.
After retiring from a distinguished career as an engineer, Ty’s father became increasingly difficult. He was verbally abusive toward her mother. The family assumed he just wasn’t adjusting well to the loss of identity that came with early retirement. Finally, after an unexplained parking lot accident, her father was assessed and diagnosed with dementia.
That was over 17 years ago, but the memory is still raw for Ty. Her voice broke as she recalled the family’s ordeal.
“Before the diagnosis, my mom endured so much distress over my dad’s behavior and verbal abuse,” said Ty. “When she learned of his diagnosis, she was able to forgive him. She became his caregiver and gave it her all. We finally understood that it wasn’t him. It was this terrible disease.”
Making Plans
An early diagnosis also gives families a chance to put safeguards in place to help protect the older adult’s assets from scammers.
“There’s an entire scam industry in this country, and it’s targeting vulnerable older people, usually those with some cognitive changes,” Chodos said.
Even without instances of fraud, an older adult’s finances may suffer from poor decisions caused by undiagnosed dementia. Ty noted that her family missed one clue that seems obvious in retrospect: her father started to spend money on luxuries like a new car or a garage repair, a departure from his normally frugal, practical ways.
In fact, financial problems, like missing routine payments or a lowered credit score, may represent an early predictor of dementia, according to a 2020 study published in JAMA Internal Medicine. The study found that Medicare beneficiaries who went on to be diagnosed with dementia were more likely to have missed payments on bills as early as six years before clinical diagnosis.
Undiagnosed dementia can be especially problematic for “solo agers” without spouses or adult children, or for those who are socially isolated.
“An older adult with undiagnosed dementia may start having difficulty managing their health care,” said Kristen Romea, LCSW, director of supportive services for Alzheimer’s San Diego. “These days it’s very difficult to do without accessing an online portal. They just stop going to the doctor, so that means they’re no longer getting treatment for the other conditions they’re living with. And they become even more isolated.”
Romea added that many older adults put off having their cognition assessed because of stigma or shame, or for fear of losing their driver’s license. In California, for example, health care providers are mandated to report a dementia diagnosis to the DMV.
How Dementia is Diagnosed
When patients express concerns about cognitive issues to a PCP, typically the first step is a cognitive screening test, such as the Montreal Cognitive Assessment (MoCA) or Mini-Cog. Patients are asked to complete tasks on an app or paper-based test that assesses short-term memory, executive function, visuospatial abilities and orientation to time and place.
If the screening test points to cognitive issues, the physician will refer the patient to a neurologist, psychiatrist or geriatrician for further evaluation. The next step might involve more in-depth cognitive testing, an extensive medical and family history and imaging tests such as a PET scan or MRI.
However, unless a patient reports concerns, most PCPs don’t perform screenings on a routine basis.
“It’s really hard to do dementia detection and diagnosis in primary care,” said Chodos. “Doctors don’t get a lot of education on dementia during their training. Dementia is a more labor-intensive, complex diagnosis to make.”
Dementia can’t be diagnosed definitively with a single blood test or scan. Cognitive assessments such as MoCA aren’t “pass” or “fail” tests; they must be considered in the context of the person’s history. An exceptionally well-educated person, for example, may earn a relatively high score, even if their cognitive abilities have declined significantly due to dementia.
PCPs are not strongly encouraged to perform routine screening. The most recent statement of the US Preventive Services Task Force, which provides preventive care guidelines to physicians, concluded that the evidence was insufficient to recommend routine screening.
Changes Ahead
Weisman thinks physicians will be more inclined to perform routine screening as they become more aware of new treatments. As recently as the mid-twentieth century, he said, doctors were reluctant to inform patients of a cancer diagnosis, a virtual death sentence with few treatment options. As the stigma attached to dementia recedes, and treatments improve, Weisman thinks doctors will be more proactive.
“I think there was a time when doctors thought, ‘Why bother the patient if we can’t do anything about dementia?’” he said. “Now we have something we can do about it.”
Ty notes progress on other fronts that could help change the picture. Researchers are developing new tools that will make diagnosis more accessible and precise, such as a simple blood test to detect biomarkers of disease pathology. Similarly, digital cognitive assessment tools are allowing doctors to move away from paper-based tools, which require someone to be present to administer, observe and interpret the results. Early use suggests these digital tools offer more accuracy in terms of prediction, automated scoring and interpretation.
Proactive Approach
In the meantime, patients and families must approach this issue proactively.
The first step is to become aware of the signs of dementia—and how they differ from normal aging. Nearly everyone over 65 will experience some measure of forgetfulness and mild cognitive decline. It’s normal for an older person to misplace the car keys from time to time. For a person with dementia, however, memory loss begins to disrupt daily life. The person may put the keys in the refrigerator or accuse others of stealing them.
People with a family history of dementia should consider asking for baseline screening even before they experience symptoms.
“I would be screening before they even start forgetting their keys, before they have any memory problems,” Ferree said.
Ty is hopeful that, one day, brain health screenings will become as routine as blood pressure checks for adults 65 and older. Until then, patients and their families need to report any symptoms of cognitive change and request evaluation.
“Individuals who are concerned about their memory, or a loved one’s memory, should make an appointment with their health care provider for a thorough cognitive evaluation,” according to the Alzheimer’s Association.
A Cautionary Tale
Today, Kelli Brown’s father resides in assisted living. Family members continue to pay off his debts.
Brown is hopeful the scammers will be caught. While dementia robbed her father of his ability to recognize the scam, his accounting habits remained intact. He kept detailed records of all the transactions with the scammer—receipts from every FedEx package received and every gift card he’d purchased. She hopes those records will enable law enforcement to bring the scammer to justice.
Meanwhile, Brown is sharing her story on Facebook as a cautionary tale, urging friends to pursue dementia screening and assessment for family members who may be affected.
“With early detection, we could have prevented Dad from giving away his retirement savings,” she said.
