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Americans over 65 has undiagnosed cognitive impairment
total annual cost of care
hours spent on unpaid care by family and friends
The idea of losing your mental abilities, your independence, your sense of self, is hard to accept. No one wants to believe their memories are slipping away, or that they will become a burden to their loved ones. And so most people won’t recognize the signs of cognitive impairment—or they will dismiss gradual decline until a crisis occurs.
When people brave the first step to raise these concerns with a primary care provider, they will typically meet with a physician who wants to help but may not have the training or time to conduct a cognitive test during the visit. Patients with signs of cognitive impairment are often sent home with inadequate support, or they are referred to specialists who are inundated with new patients. In both cases, the patient misses a critical window for early intervention, which can help slow decline and preserve quality of life.
This is a major public health problem affecting millions of Americans. Without concerted action it will get worse. America’s population is rapidly aging, and there are not enough adequately trained clinicians to meet the demand. More than one in five people over age 65 are already living with undiagnosed mild cognitive impairment, which is commonly caused by early-stage Alzheimer’s disease and is a precursor to dementia.1 Clinicians are diagnosing younger patients as well—people in their 50s or even 40s who are still in the workforce, sometimes with children at home, and too young to qualify for Medicare.
We now know the brain undergoes physiological changes associated with Alzheimer’s disease that are detectable up to 20 years before symptoms emerge. New tools and insights can accurately identify these changes in primary care, improve management of disease, and potentially give patients more time to live independently:
Clinicians across the country, including several authors on this report, are developing new models of care to bring these advancements to bear against Alzheimer’s disease—by incorporating validated cognitive assessment tools and blood-based biomarker tests into care pathways, building interdisciplinary teams, and using “brain health navigator” approaches to assist patients and families with steps from diagnosis to care planning. These innovative approaches are enabling primary care to deliver early, accurate diagnosis, efficiently refer patients for appropriate treatment, and provide better education and support for patients and families at all stages of Alzheimer’s disease.
Our goal is to develop a robust architecture for primary care to offer routine brain health assessment, biomarker-based testing, and coordinated care for Alzheimer’s disease, with specialists managing more complex cases. This report describes several leading examples of new care models and provides recommendations for government, professional and healthcare system leaders to take action.
Many health systems struggle to deliver Alzheimer’s care in a way that is financially viable. We see two main barriers. First, clinicians and their staff spend a lot of time doing work that is not billable, such as coordinating care, following up on recommended plans, and educating patients and care partners. Until these services are fully reimbursable they will lead to financial losses in the practice and thus be impossible to scale—regardless of how much physicians and staff want to help their patients.
Second, larger healthcare systems are set up to measure and assess the services comprising Alzheimer’s care separately. Administrators typically see that neuroimaging and infusion services generate positive revenue, while primary care assessments and other services integral to providing Alzheimer’s care lose money for the system. Without a clear care pathway that accounts for the downstream revenue generated by diagnosing Alzheimer’s disease in primary care, it will not be practical to invest in scaling all of the necessary services.
With these dynamics in mind, targeted actions and policy changes at this moment can allow successful care models to scale in order to meet the enormous demand for Alzheimer’s care. Adapting these models across the U.S. healthcare system, even in rural areas where medical resources are scarce, requires attention to how reimbursement occurs. By eliminating payment barriers to better care, more patients will get the support they need.
All parties in the system have a role to play: Federal and state policymakers, insurers, professional societies, and health systems.
This includes a nutritious diet, regular exercise, better treatment of vascular risk factors such as hypertension, high cholesterol and diabetes, brain training, social activity, and hearing aids, all of which hold the potential to improve quality of life for patients and families. 2,3,4
The earlier these changes happen, the greater the chance of benefit.
Motivational interviewing and moving patients to actionable lifestyle changes are time-consuming for primary care providers and generally not producing revenue. The U.S. Preventive Services Task Force could classify a scientifically validated subset of these changes as preventive services, which would improve access to better support resources (dietitians, counseling, group exercise, sleep monitoring, and others).
Federal and state programs can ensure these services are available without cost-sharing to further reduce barriers for those with limited funds.
This includes updating CPT or HCPCS code descriptions to support the use of new and emerging technologies, like digital cognitive assessments. At a minimum, these organizations should:
This should include the American Academy of Neurology, American Association of Nurse Practitioners, American Association of Physician Assistants, American Academy of Family Physicians, American Geriatric Society, American Association for Geriatric Psychiatry, Society of General Internal Medicine, and other relevant professional societies. Doing so will accelerate the use of team-based care in health systems and private practices.
See “New Models of Care” below to learn how clinicians at the University of Washington doubled the number of patients diagnosed with mild cognitive impairment in primary care in nine months.
This should include revenue from testing, imaging, treatment and other services that form the Alzheimer’s care pathway in a particular healthcare system. Some philanthropic initiatives are demonstrating how these new care pathways can facilitate billable revenue streams to improve patient care and health system efficiency. Best practices for creating scalable care pathways should be developed and expeditiously communicated to healthcare systems.
The University of Kansas Alzheimer’s Disease Research Center (KU) is demonstrating a scalable, health system-wide model for improving early detection of mild cognitive impairment, Alzheimer’s disease, and dementia in the primary care setting.
In this model, a specialized memory care center partners with primary care providers (PCPs) across the state to bring the latest innovations in Alzheimer’s detection into routine practice. Chief among them are blood-based biomarker tests, which can detect Alzheimer’s with a high degree of accuracy. Recognizing the importance of these tests, in 2024 KU established in-house lab capabilities for processing blood-based biomarker tests and began integrating them into familiar primary care workflows.
PCPs receive the training, structured workflows, and decision support needed to help patients obtain an accurate diagnosis and appropriate care. This includes a “Cognitive Assessment Visit” template provided in the electronic health record, and which is compliant with requirements for CPT billing code 99483. As a result, PCPs are empowered to use new tools, confidently diagnose early cases of Alzheimer’s disease, and swiftly deliver appropriate care in collaboration with memory clinics.
KU also redesigned its memory care model, fine-tuning referral pathways to match the complexity of patient needs. This includes e-consults for straightforward cases; a diagnostic clinic for complex cases; anti-amyloid treatment for eligible patients; and ongoing care management. The memory clinic relies on trained non-physician providers, typically nurse practitioners and physician assistants, to handle routine memory care, which allows neurologists to focus on the most complex cases.
The Cognitive Care Network (CCN) at KU, staffed by more than 10 specialty-trained social workers, has been instrumental in building capacity for early stage diagnosis and care in rural communities. Since its inception in 2018, the network has scaled to involve 128 community providers across 27 practice partnerships in Kansas, delivering early dementia detection that previously required travel to Kansas City or Wichita. In 2024, the CCN served 1,739 families. The resulting system is one that increasingly avoids neurology referral bottlenecks, connects partner practices and families to available resources, and quickly moves eligible patients to the anti-amyloid clinic.
KU is currently working on a plan to create regional memory care hubs in strategic locations across Kansas, so that no resident needs to drive more than 100 miles for consultation or treatment. This model demonstrates how urban academic health systems and rural practices can work together to enable access to innovative diagnostics in the primary care setting where patients typically receive care.
A team of primary care providers and dementia experts at the University of Washington recently published the results of a two-year initiative to improve earlier detection of Alzheimer’s disease and related dementias in the primary care setting. Using a practical, scalable package of clinical tools and training implemented across 14 community-based clinics, it markedly improved detection of cognitive impairment.
These outcomes suggest that with the right workflow and educational support, primary care physicians can accurately and efficiently diagnose these important conditions and help get patients into better care.
This program, Cognition in Primary Care, is designed to work within busy primary care practices, providing concise continuing education which is integrated with practical tools in the electronic health record, which make it easy to put the training into practice.
Importantly, the education content goes beyond simple detection, to include practical tips for evaluation and management in the long term, beyond just screening. The intervention highlights proven, low-cost ways to maintain and improve brain health, as well as guidance for treating the behavioral and psychological symptoms of dementia and helping address important issues related to advance care planning.
This approach offers a scalable framework for primary care on a national scale. It aligns with the “4Ms” framework of age-friendly care (i.e. medications, mental capacity, mobility, and what matters most). It can also help support newer value-based care initiatives such as Medicare’s GUIDE model for comprehensive dementia care, which requires people to have a formal dementia diagnosis to be eligible for enrollment.
The goal is to identify primary care practices around the country who will receive help, at no cost, in adopting the program to their setting.
The Indiana University Brain Health early detection program is developing and deploying scalable approaches for assessing and diagnosing cognitive impairment in primary care settings. In this model, “brain health navigators”—specially trained, registered nurses spanning primary and specialty care—support patients, families, and health care providers throughout the Alzheimer’s disease journey. They serve as a personalized point of contact, help investigate cognitive concerns, coordinate care, and connect patients and families to resources and services.
Additionally, patients who saw the navigator were more likely to agree to a blood-based biomarker test to assist with diagnosis.
The patient journey starts in primary care. Either before or during primary care visits, patients 65 and older are offered an assessment using validated technology-based tools for detecting cognitive impairment. If the assessment results are abnormal, the primary care provider can easily refer the patient to the navigator through the patient’s electronic health record. The navigator meets with the patient and care partner(s)—either in-person or virtually—to complete the evaluation, which includes further cognitive history-taking and testing, and thoroughly reviews other potential reversible causes of cognitive impairment. They also work closely with the primary care provider to obtain any necessary laboratory or imaging tests, such as a blood-based Alzheimer’s biomarker test or an MRI of the brain. Throughout the process, the brain health navigator provides:
The brain health navigator shares information with the patient’s primary care provider, enabling a clear and accurate picture of the patient’s symptoms and potential contributing factors. It also allows the provider to efficiently refer eligible patients for disease-modifying therapy and specialist care with neurology, geriatrics, and neuropsychology. The patient is involved in every decision.
This team-based approach makes it possible to provide patients comprehensive brain health evaluation and a great deal of support within primary care, while reducing the amount of work required from the primary care provider. On a health-system level, the close coordination that the brain health navigator provides reduces redundancy and improves the effectiveness of referrals to specialist care.
Wake Forest has developed the innovative MindCare365 model, which combines phone-based assessment and team-based care, to screen patients earlier in primary care for cognitive impairment and deliver personalized care recommendations. The program is modeled after screening processes for cancer and heart disease. Just as physicians might order an MRI, they can order a MindCare365 cognitive assessment for a patient with a cognitive concern, simply by selecting a dropdown option in their electronic health record system. This order then kicks off the scheduling of an in-home telephone cognitive assessment, performed by highly trained staff. After initial assessment, a clinician (usually a non-physician provider) conducts a telehealth visit with the patient to review results and, with patient agreement, oversees further assessment of modifiable risk factors and biomarkers.
The Wake Forest health system now has over 400 primary care doctors referring to MindCare365 and has conducted initial assessments of over 800 patients in the past year. More than 50% of the patients referred have either mild cognitive impairment or early dementia (clinicians are instructed to not refer patients with dementia at the level of driving loss or beyond). All patients with mild cognitive impairment receive coaching on modifiable risk factors for Alzheimer’s and related dementias and, for those eligible, disease modifying medication therapy.
Compared to traditional cognitive assessments that can involve up to nine months of waiting for a dementia specialist to become available, MindCare365 conducts initial assessments within 10 days.
This is because the initial assessment can be administered by a trained high school or college-educated psychometrician, as opposed to traditional assessments. This approach reduces strain on providers, accessing them only when needed, and avoids unnecessary steps and costs.
The Alzheimer’s Policy Working Group is dedicated to building a system of care that improves life for patients and their families. Sign up for updates to stay in the loop and learn about opportunities to collaborate.