The Dementia Diagnosis Gap Is Wider Than We Think

I still remember seeing my grandfather’s Post-it notes all over his house. He’d write things like “Shun elevators, take the stairs,” and “Do math.” My grandfather identified his cognitive decline long before there was an efficient way for clinicians to catch it early, and did what he could to slow down the progression. As a family of professionals in the healthcare industry, we still struggled to get him the screening and treatment he needed. 

This was decades ago, and unfortunately, despite many significant breakthroughs in the field, dementia detection still has significant room for improvement. There are more than 60 million adults aged 65 and older in the U.S., and research has found that over 60% of older adults with probable dementia don’t know they have it. As part of my work in dementia screening, I interface with healthcare providers. Many have admitted they’ve had patients who fit the criteria for a mild cognitive impairment or dementia diagnosis, but they’ve stopped short of making it, for a variety of reasons.

Today, some doctors view dementia similarly to how they viewed cancer decades ago. Cancer used to be discussed in hushed tones and felt crushing to diagnose. Because of a major push to fund cancer research, which unfortunately has recently dipped, treatment options have improved, and doctors can equip patients with tangible next steps that could lead to a cure. 

That clarity and confidence don’t exist for Alzheimer’s and other dementias. There are new medications available, but they’re imperfect. There have been profound findings on the impact of lifestyle change, but many clinicians don’t know how to speak to them. There are exciting new programs to support people with Alzheimer’s and their families, but they’re not yet widely available. Doctors don’t have the resources or the bandwidth to help navigate this follow-up care, so they hesitate to put an official stamp on the diagnosis.

This needs to change. Alzheimer’s costs American families upwards of $360 billion per year, and with our growing aging population, the disease needs to be more of a public health priority. As more patients are screened and diagnosed, we learn more about the disease to inform clinical trials and drug developments. This spurs new treatments and ultimately equips doctors with more effective options to improve patient outcomes. Here’s what needs to happen to make this a reality.

Empower patients 

Every single adult above the age of 65 should get a cognitive impairment screening. In fact, the Centers for Medicare & Medicaid Services (CMS) made it a requirement in 2011, like measuring blood pressure or cholesterol. When I mention this to friends who are part of the Baby Boomer generation, they are often surprised to learn this and are prompted to see their provider. The problem is, many providers don’t comply or do the minimum required to tick the box, and patients don’t know that a screening is something they can request. Making cognitive screening a regular part of these appointments for patients 65 and older normalizes the idea of checking brain health annually and empowers older adults to raise concerns about early symptoms if and when they arise.  

Equip primary care providers 

Primary care providers (PCPs) are on the frontlines of dementia diagnosis, but many don’t have the right tools or enough time to lead the charge. We need to equip providers with streamlined, objective assessment tools that integrate into existing workflows. New technology has the ability to make assessments concise, giving PCPs more time to spend discussing next steps with their patients. This tech should prioritize care planning support to guide primary care practitioners in helping patients and caregivers with timely, appropriate and personalized next steps to support the patient at every stage. Beyond technology, continuing education should include up-to-date guidance on recognizing early signs of cognitive impairment, navigating conversations with patients and families and connecting them with subsequent care. 

Emphasize early intervention

One of the biggest headlines of 2023 was how significantly mild cognitive impairment (MCI) gets overlooked (a USC analysis found a staggering 99% of PCPs underdiagnose it). While a significant subset of individuals with MCI go on to develop Alzheimer’s or other dementias, in some cases, the impairment is due to other, sometimes addressable causes (e.g. sleep apnea, infection, major depression, overmedication). Either way, MCI is a major red flag and an important call to action. Medicare’s V28 changes have helped shift attention to milder stages of dementia. I hope this trend continues, directing care and attention to these early signals as we discover more ways to stop or slow progression.

Dementia diagnoses are complex. Believe me, I know. After dealing with my grandparents’ conditions, I am navigating the ripple effects of a dementia diagnosis all over with another close family member. We need to empower our aging population to seek screening, providers to embrace diagnosing and regulatory bodies to promote awareness and simplify reimbursements. With dementia cases in the U.S. expected to double by 2060, now is the time to close the gaps.

Picture: Radachynskyi, Getty Images

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