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Seven Million Americans Have Mild Cognitive Impairment and May Not Know It

Q. Last week, I read your article about “Tip-of-the Tongue” moments, where someone can forget a word occasionally. I was relieved when you said, for the most part, this is not a sign of dementia and can be associated with normal aging. What I am concerned about is mild cognitive impairment (MCI). I read that 7 million Americans have it but don’t know because they haven’t been diagnosed. That’s alarming with MCI sometimes being a precursor to Alzheimer’s disease. If I had MCI, I’d want to know so I could get early treatment and be able to plan ahead. What is being done when it comes to alerting people about MCI, and how would I know if I am affected by it? Thanks for your help!

A. For many people, forgetting keys, struggling to plan tasks, difficulty navigating well-known places, or even forgetting a family member’s name during a conversation can seem like a normal part of the aging process. As described in the article you mentioned, sometimes these things can be just part of getting older or perhaps the result of a lack of sleep. Those lapses can also be symptoms of something more serious: mild cognitive impairment, or MCI, which could be an early sign of dementia such as Alzheimer’s disease. Not everyone who has MCI develops dementia but an estimated 10–20 percent of people age 65 or older with MCI develop dementia over any given one-year period. According to the National Institute on Aging, part of NIH, conditions such as diabetes, depression, and stroke may increase a person’s risk for MCI.

MCI refers to problems with memory, judgment, language, and other mental skills that are not disabling but go beyond the occasional slips that are expected with age. Signs of MCI may include:

    • Losing things often;
    • Forgetting to go to events or appointments;
    • Having more trouble coming up with words than other people of the same age.

Unfortunately, most people who have MCI don’t know it, so they’re unable to take advantage of preventive measures or new treatments, such as a recently approved drug for Alzheimer’s disease that could slow its progression. Those are the findings of two new studies published by researchers at the University of Southern California (USC).

In one study, published in the journal Alzheimer’s Research & Therapy, the researchers analyzed data from 40 million Medicare beneficiaries ages 65 and older and compared those who were actually diagnosed with MCI to the rate of diagnosis expected in this age group. They found that fewer than 8 percent of expected MCI cases were actually diagnosed with MCI. Specifically, the study found that of the 8 million individuals predicted to have MCI based on their demographic profile, which includes age and gender, about 7.4 million (92 percent of expected MCI cases) went undiagnosed.

The second study, published in Journal of Prevention of Alzheimer’s Disease, looked at 200,000 primary care clinicians and found that 99 percent of them under-diagnosed MCI.

These are some of the observations from both studies, according to Soeren Mattke, director of the University of Southern California Brain Health Observatory:

    • The studies were conducted to raise awareness of the under-diagnosis of MCI.
    • He cautions that if you are experiencing forgetfulness, pay attention to early changes in cognition, and tell your doctor about them. Ask for an evaluation.
    • He wants more physicians to realize that there’s a measurable difference between normal aging and MCI.
    • The prevalence of MCI is influenced by both socioeconomic and clinical factors. People with cardiovascular disease, diabetes, hypertension, and other health issues are at higher risk of cognitive decline, including MCI and dementia. These health issues are more prevalent among members of historically disadvantaged groups.
    • The researchers found that detection of MCI was even poorer in those groups.
      • This is concerning because the overall disease burden in those populations is higher. “So, they’re hit twice: They have higher risk and yet lower detection rates,” says Mattke.
    • Some older adults with MCI eventually develop Alzheimer’s — around 10 percent per year, according to the Alzheimer’s Association.
    • Recent advances in the treatment of the most common cause of MCI — Alzheimer’s disease — lend new urgency to improving detection of MCI.
    • Detecting cognitive decline early might identify those patients who would benefit from recently approved Alzheimer’s treatments. “For MCI caused by Alzheimer’s disease, the earlier you treat the better your outcomes,” he says. “This means even though the disease may be slowly progressing, every day counts,” Mattke says.
    • MCI, by definition, doesn’t cause disability, whereas dementia is itself a disabling condition reflecting more serious cognitive impairment. In MCI, challenges to everyday functioning tend to be more sporadic.
    • MCI can come in various forms: forgetfulness is the most familiar form. Another is an executive functioning, which mainly affects efficiency in getting things done and difficulty with tasks that used to be easier, such as balancing a checkbook or paying bills online. There is even a behavioral variant in which mild changes in personality may predominate. These various forms of MCI often coexist.

“There’s really just a tiny fraction of physicians in a position to diagnose MCI who would find these cases early enough for maximum therapeutic potential,” Mattke explains.

Why Is MCI So Widely Under-Diagnosed?

There are several reasons MCI might be so widely under-diagnosed in the United States. One reason is that an individual may not be aware of or bring up their concern. In some cases, a physician may not notice subtle signs of difficulty, or a clinician might notice but not correctly enter the diagnostic code in a patient’s medical record. Another important reason is that time during a clinical visit may not be set aside to discuss or assess brain health, unless the visit was planned expressly to include it. Detection of cognitive impairment is not difficult, but it does not occur without planning.

In a 2022 Alzheimer’s Association survey, the association found that “77% of primary care doctors found MCI difficult to diagnose, and many said that patients are reluctant to pursue a diagnosis.” On top of that, as mentioned, “primary care doctors have so much to cover with older patients during a short appointment that a cognitive evaluation may not be doable.”

Mattke believes that “risk-based MCI detection, where you focus your attention on people with the greatest risk, would help identify more cases because time and resources could be focused on these high-risk individuals. Digital tests that could be administered before a medical visit could also help more people learn about their cognitive risk and current functioning.”

MCI Doesn’t Always Mean You’ll Get Alzheimer’s or Another Form of Dementia

If you have MCI, “it is not a foregone conclusion that you’re going to develop dementia,” said Mattke. “Determining whether MCI is due to early Alzheimer’s takes more than a screening test. There has to be biological evidence of Alzheimer’s, too.”

To get the new (and very expensive) drug, Leqembi, people have to undergo testing, which usually involves a brain scan or spinal tap, to see whether they have signs of amyloid “plaques” in the brain. The drugs target those abnormal protein deposits, with the aim of slowing Alzheimer’s progression. Given the many underlying causes of MCI, it is highly recommended that older adults discuss their personal situation with their doctor.

If you or a loved one has had memory lapses and/or was diagnosed with MCI or Alzheimer’s or another form of dementia, besides taking advantage of treatment options, make sure their legal paperwork is in order. Before too much time passes, your loved one may not be competent to sign anything. Take the lead, and find out if they have legal documents in order and up-to-date, such as a Financial Power of Attorney, Will, Trust, and Advance Medical Directive. If not, be sure to visit an experienced Elder Law attorney, such as myself, as soon as possible.

Planning for Long-Term Care

If you have a loved one with dementia, it is likely that your loved one will eventually need continuous licensed nursing care in a skilled care facility. Nursing homes in the DC Metro area cost between $14,000–$17,000 a month, which is a catastrophic amount for most of us. With proper planning, Medicaid will pay for most or all of the nursing home expenses.

In cases where a family member is in the early stages of dementia or Alzheimer’s disease, early planning is especially important. The family member needs to make decisions about financial matters while he or she still has the mental capacity to do so.

Fairfax Elder Law: 703-691-1888
Fredericksburg Elder Law: 540-479-1435
Rockville Elder Law: 301-519-8041
DC Elder Law: 202-587-2797

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.

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