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In the Pipeline-Dementia
NINDS Program Tackles Problem of ‘Severely Underdiagnosed’ Dementia

ARTICLE IN BRIEF

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DR. RODERICK CORRIVEAU: “DetectCID is not so much about the science of developing new tools to detect dementia. Its about the science of transferring that ability in a practical way so that primary care has what it needs in order to diagnose dementia in ordinary real-world clinical settings.”

Roderick Corriveau, PhD, discusses the tools, structure, and aims of a NINDS-spearheaded consortium to improve underdiagnosed dementia in the United States.

In February, the Consortium for Detecting Cognitive Impairment, Including Dementia (DetectCID) held its kickoff meeting in San Francisco. The five-year program, overseen by the National Institute of Neurological Disorders and Stroke (NINDS), is intended to develop, test, and validate methods for improving detection of dementia in community and primary-care settings — a huge problem in the field of neurological care. Three related projects are being funded — one at the University of California, San Francisco, led by Katherine Possin, PhD, who is also the cross-center coordinator; one at Northwestern University, led by Richard Gershon, PhD; and one at Albert Einstein College of Medicine, led by Joe Verghese, MBBS.

Neurology Today spoke with Roderick Corriveau, PhD, program director at the NINDS, about the problem of dementia detection in the U.S. and about DetectCID.

WHAT IS THE STATE OF COGITIVE IMPAIRMENT AND DEMENTIA DIAGNOSIS TODAY?

Cognitive impairment including dementia is really severely underdiagnosed in the United States. Outside of research settings, only about half of the people who are affected by dementia actually get a diagnosis from a doctor. And that means that millions of Americans that are affected don't have a diagnosis. One of the likely results is that there's increased disease burden due to the delay or never-initiated treatment of reversible conditions, or delay of the use of appropriate medical support services and delayed critical planning.

And something that people forget about when thinking about dementia and the absence of diagnosis in about half of the American population is in addition to delaying certain things that are important, there's a real risk of harm. If a person is undiagnosed or incorrectly diagnosed, when that person has Lewy body dementia, there is a risk that they'll be prescribed drugs such as certain antipsychotics, anesthetics, or sleep medicines that can make their situation worse rather than better.

HOW DOES THE NEW CONSORTIUM ENTER IN THAT DISCUSSION?

DetectCID is not so much about the science of developing new tools to detect dementia. It's about the science of transferring that ability in a practical way so that primary care has what it needs in order to diagnose dementia in ordinary real-world clinical settings. So this is all about implementation. And it's about what happens from the moment that the patient walks through the clinic door, to the waiting room, clinician time, recommended follow-up, paying for care, the whole picture, and it's much broader and more complex than specialized clinical research. If I were to talk about strengths and weaknesses, the clinical research field brings the strength of having the ability to do this, the ability to detect cognitive impairment including dementia, and the unaddressed weakness is that the expertise has not yet been effectively extended to and implemented in everyday care settings across diverse populations in the United States.

WHAT DOES THE DATA SHOW ABOUT COGNITIVE IMPAIRMENT AND DEMENTIA DETECTION IN WHITES COMPARED TO OTHER ETHNIC GROUPS?

There are a few studies that report that missed or delayed diagnosis in Alzheimer's and other dementias are more common among older African-Americans and Hispanics than among older whites, for example. The reasons suggested for these findings include access to health care and connecting to available health care, and for Hispanics, in part it can be a language barrier. But socioeconomic characteristics in any ethnic background including lower levels of education, higher rates of poverty, and greater exposure to early life adversity and discrimination, also may increase risk.

Having said that, our scientific understanding of the reasons for differences in burden of dementia among different ethnic groups including in the United States is really very limited, and that's why one of the mandates of the DetectCID is to understand and address barriers in detecting dementia in diverse American populations.

HOW IS THE CONSORTIUM'S FOCUS UNIQUE FROM OTHER ONGOING EFFORTS?

I won't say what the consortium is trying to do is unique. It is unusual, however. This is the first national consortium that I know of that's working together in very different areas — in the Bronx, in Chicago, in the San Francisco Bay area — to try to, in a systematic way and with a laser focus on implementation, do what is needed to routinely detect cognitive impairment, including dementia, in everyday clinical care settings in the United States.

TELL US ABOUT HOW THE PROJECT IS STRUCTURED TO ACHIEVE THIS GOAL.

We want to try to achieve this goal of detecting dementia in primary care by focusing on the simplicity of the problem. Each site is to develop paradigms of clinical methodologies for detecting incident cognitive impairment including dementia, when a concern is raised by the patient, a caregiver, or a care provider, that can be applied to large and varied adult populations in the United States. And they're to do that by really recognizing two groups in the patients — two groups and only two groups — and provide a rationale for follow-up for these two groups.

The first group — where no objective cognitive impairment has been detected —includes individuals for whom the cause of concern is unknown or appears to be a consequence of a condition that's not cognitive impairment. For example, hearing loss or something else. And appropriate recommendations include periodic reassessment referral for medical follow-up of an underlying condition that's not cognitive impairment.

The second group includes individuals with cognitive impairment due to an underlying medical condition that can be managed in primary-care — perhaps reversible like vitamin B12 deficiency, as well as individuals with cognitive impairment including dementia detected that requires work-up by a specialist. Recommendations for this group could include treatment in primary care if appropriate, follow-up clinical assessment, and referral to one or more specialists.

This second group is a very challenging one because one of the big barriers to implementation is that different primary-care settings have different abilities to follow up with any particular patient. Some primary care facilities will be very comfortable with certain assessments and follow-up and others will say, “We don't have a lot of experience,” or, “We don't have the infrastructure.” And they would prefer referral. So there needs to be flexibility in the recommendations for follow-up that come from the consortium for detection of cognitive impairment.... Those recommendations need to be turn-key. They need to be concrete enough that primary care can look at them and follow up and flexible enough that primary care won't look at them and say, “You know what we can't do this.” I think that flexibility is going to be a critical element in success here.

TELL US ABOUT THE THREE PROJECTS BEING FUNDING THROUGH THE CONSORTIUM.

The UCSF Brain Health Assessment is electronic tablet-based and evaluates cognitive skills that are commonly affected by neurocognitive disorders, including memory, executive speed, and visuospatial and language. Northwestern University is developing a downloadable app-based approach called MyCog that's comprised of two cognitive measures. Albert Einstein is using something that's called 5-Cog and it overcomes many implementation barriers by only requiring a pen and paper and a stopwatch. And to do this, 5-Cog includes a culturally tuned picture- based memory impairments test that does not need to be administered by a medical professional, followed by a walking test and a short, 2-item depression test.

I think it's such a strength that they're using different paradigms because the population in the United States is so diverse with different socioeconomic statuses and different ethnic groups with different cultural sensibilities. I don't think there's any possible way there will be only one way of doing it that will work for everybody in the country.

HOW WILL THE INITIATIVE MEET THE TRICKY GOAL OF DEVELOPING ASSESSMENTS THAT ARE BOTH QUICK AND EFFECTIVE?

The strategy of this program is to not let what we aspire to do in the future get in the way of good and needed things that we can accomplish right now. By focusing on diagnosing the presence or absence of dementia in primary-care, we think that we can address the problem that about half of the people in the country who have dementia and never get a diagnosis. We think that's an achievable goal. What may not yet be achievable in primary care, and what could prevent DetectCID from reaching this very specific and applied goal, is differential diagnosis among different types of dementias, for example among Alzheimer's disease, Lewy body dementias, frontotemporal dementia, and vascular dementias. Thus, the choice made was to focus on what can be done in primary care that's often been overlooked and that would do a whole lot of good. Even if it's not the flashiest goal, it would be a critical step forward in the field and for clinical care in the United States.

HOW WILL THE PROJECTS INTERACT IN A WAY THAT THREE SIMILARLY THEMED BUT TOTALLY SEPARATE NINDS-FUNDED PROJECTS WOULD NOT?

If the consortium works in the best way possible, all of the principal investigators and the researchers will be vested in each other's success because there will be a need for different paradigms with slightly different approaches suited to different populations in the country.

The PIs — Dr. Verghese, Dr. Possin, who is also the director of the cross-center coordinating team, and Dr. Gershon — have embraced the possibility of, when their paradigms have reached a certain level of readiness, they will have the other PIs implement those paradigms to some degree in their own research programs for independent validation and cross-referencing and cross-learning and cross-improvement of the paradigms. And that's something you simply can't do when you have completely independent research programs at their own given centers.

SO, LET'S SAY THAT AFTER FIVE YEARS, YOU HAVE ROCK-SOLID TOOLS. WHAT'S THE NEXT STEP?

There is going to be multisite development and consortium-based validation of paradigms for detecting cognitive impairment in primary care. The next step could be a full-scale clinical trial involving many, many sites — much more than three sites — and many thousands of patients. It would be a scale-up that would be even more on the implementation side.

WHAT IS THE ULTIMATE GOAL?

The holy grail would be to come up with effective detection paradigms that connect the dots between diverse patients, primary care, clinical researchers, and insurers, and to find a way for it all to fit together so that dementia care, and thus patients and their families and caregivers, can benefit. Ultimately this is not just about embracing the academic principle that detecting dementia in everyday care and following-up appropriately is a good idea, but rather it is about affecting practical everyday solutions for and implementation of those principles, involving all levels of stakeholders — the patients all the way to insurers. That's the holy grail. And that's when we would be in position to improve lives and measure impact.

LINK UP FOR MORE INFORMATION:

• DetectCID: https://www.detectcid.org