The Importance of Early Dementia Detection and Diagnosis

Transcript

Intro: I’m Dr. Nathaniel Chin, and you’re listening to Dementia Matters, a podcast about Alzheimer’s disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer’s disease research and caregiver strategies. Thanks for joining us.

Dr. Nathaniel Chin: Welcome back to Dementia Matters. Today, I want to talk about a paper by Nicole Fowler and colleagues published in the Journal of Internal Medicine in 2025 titled, “Implementing Early Detection of Cognitive Impairment in Primary Care to Improve Care for Older Adults.” I was drawn to this article because it speaks directly to one of the central issues in memory care—not whether early identification matters, but why, despite all we know, so many people with cognitive impairment are still identified late or not at all.

Over the last decade in memory care, I've watched my own clinic change. When I first started doing this work, I was much more often giving diagnoses of dementia, including dementia at a moderate stage. Many of the cognitive test scores I saw were essentially at the floor, reflecting severe impairment by the time someone finally made it to the clinic. Families often arrived not because they were wondering whether something subtle was changing, but because the decline had become impossible to ignore. Now my practice looks very different. Nearly half of my patients have mild cognitive impairment, or MCI. Perhaps a quarter to a third have subjective cognitive decline, where they are noticing subtle changes but standard testing may still be largely reassuring. The rest tend to have mild stage dementia. So in my own clinic, that means more people are seeking evaluation earlier than they once did. This is often because they want a baseline, they have noticed something subtle, or because they want a reference point in case changes unfold over the next five or 10 years, but that is just my clinical experience and not the conclusion of this paper. In fact, the article is a reminder that at the population level, under-diagnosis and delayed diagnosis remain major problems.

The authors argue that, despite the growing prevalence and societal impact of Alzheimer's disease and related dementias, too many people are still living with cognitive impairment for a long time before anyone recognizes it, names it, or responds to it. There are many reasons for that, and most of them are understandable and deeply human. Early cognition change is easy to rationalize. Forgetfulness gets attributed to stress, poor sleep, normal aging or just being busy. Families may sense something but hesitate to say it out loud. Patients may conceal symptoms. Patients may conceal symptoms because they are frightened of what they could mean or because the stigma around cognitive decline remains so powerful. The paper notes that older adults and caregivers may not recognize the deficits, may lack insight into them or may just hide them because of the fear and stigma. What I found especially striking is the author's observations that healthcare providers often overestimate how upset a patient will be by a diagnosis, while underestimating how willing patients may be to talk about brain health, lifestyle changes and ways to delay progression. That feels really important because one of the biggest barriers in this space is not only what patients fear, but what clinicians assume patients fear. Sometimes the conversation never starts because everyone in the room is trying to protect everyone else from discomfort. The numbers in the paper are sobering. In 2017, it was estimated that 60.7 percent of Alzheimer's disease and related dementia cases in the United States went undetected and in low and middle income countries, that number may rise to as high as 90 percent. More recent Medicare claims data found that 40 percent of older adults with cognitive impairment consistent with dementia had either a late diagnosis or no diagnosis at all. Detection rates for mild cognitive impairment are even lower, with only about 8 to 11 percent of individuals receiving a timely diagnosis. That low detection rate for MCI matters enormously because mild cognitive impairment is often the very stage when we have the greatest chance to make a difference. These are people who are often still independent, still highly engaged in their lives and able to participate fully in planning and decision-making. This is the stage when attention to exercise, sleep, hearing, vascular risk factors, social engagement, cognitive stimulation and medication review may have the greatest value. It is also increasingly the stage when discussions about disease-modifying therapies would occur and become most relevant. Beyond the individual patient, earlier and less stigmatized identification is also critical for clinical trials that aim to slow progression or prevent the development of dementia in the first place. If we want those trials to succeed, we have to find people earlier. The burden of delayed diagnosis also falls unevenly. The paper highlights that underrepresented and underserved groups are disproportionately affected. On average, American non-Hispanic white individuals receive a dementia diagnosis about 31 months after symptom onset, compared with 35 months for non-Hispanic Black individuals and 44 months for Hispanic individuals. These differences reflect more than just numbers and statistics. They represent lost time for education, treatment, support and future planning.

This is why I continue to come back to the same mission—to de-stigmatize cognitive aging, identify cognitive change at the earliest possible moment and then intervene with lifestyle interventions and medications when needed. Destigmatizing earlier identification helps the individual because it opens the door to explanation, support, planning and treatment. That same mission is one reason I wrote my upcoming book, When Memory Fades, What to Expect at Every Stage from Early Signs to Full Support for Alzheimer's and Dementia. I will likely mention it periodically on this podcast because many of the topics in the book overlap directly with the topics we discuss here. The book is a part of the same larger effort, helping people understand what cognitive change can look like, what to expect at different stages and how patients and families can respond with greater clarity and less fear. Details about the book are in the show notes.

What I hope listeners take from this paper is that delay is not neutral. When cognitive impairment goes unrecognized, people do not simply remain without a label. They lose time—time for explanation, time for support, time for planning, time for treatment and time for the kinds of lifestyle changes that may matter most early on. In many cases, families also lose a chance to understand behaviors and context, which can increase conflict, confusion, caregiver burden and preventable crises. The good news is that the field has changed. We have better tools, better evidence and more practical guidance for primary care. There's more attention to brain health and more therapeutic possibilities than we ever had before. But this article is also an important reminder that progress in the field does not mean the problem is solved in the broader population. Many people with cognitive impairment are still not being identified early enough, and many are not being identified at all. Closing that gap is one of the great tasks in memory care right now. It means reducing stigma, training clinicians to ask better questions and recognize functional change sooner, and helping families understand that earlier evaluation is not an act of pessimism but of preparation and care. It also means normalizing conversations about brain health early enough that patients can benefit while there's still more we can do and, when appropriate, participate in clinical research that aims to slow progression or prevent dementia altogether. I look forward to a time when people talk openly about cognitive aging, when changes are recognized sooner and patients and families access support before they are in crisis. I know we can't fix everything, but we can do far more than before and this is especially true when we start early.

Outro: Thank you for listening to Dementia Matters. Follow us on Apple Podcasts, Spotify or wherever you listen. Or tell your smart speaker to play the Dementia Matters podcast. Please rate us on your favorite podcast app. It helps other people find our show and lets us know how we're doing. If you enjoy our show and want to support our work, consider making a gift to the Dementia Matters Fund through the UW Initiative to End Alzheimer's. All donations go toward outreach and production. Donate at the link in the description. Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center at the University of Wisconsin-Madison. It receives funding from private, university, state and national sources, including a grant from the National Institutes on Aging for Alzheimer's Disease Research. This episode of Dementia Matters was produced and edited by Caoilfhinn Rauwerdink. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. To learn more about the Wisconsin Alzheimer's Disease Research Center, check out our website at adrc.wisc.edu. That's adrc.wisc.edu and follow us on Facebook and Twitter. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.