By Tim MacLeod, PhD
Growing up, I was very close to my grandfather Gus. When he started having memory problems, his family doctor dismissed our concerns as the normal aging process. In the small town where he lived, there weren’t testing resources to get answers – so we didn’t push. Being a kid, I thought this is just what happens when adults get older.
What none of us could see – not my family, not his doctor – were the things right in front of us that could have made a difference. Had anyone done a proper workup, they might have caught that his medications needed adjusting, that his blood pressure and diabetes weren’t being managed well, and he’d stopped being active after my grandmother died. These were simple things that a family doctor, with the right training and support, could have addressed, that could have meaningfully extended his independence.
Two decades later, when I started working in Alzheimer’s disease, I was floored to discover how little had changed. Patients and their families were still facing the same problems that my family had with Gus. And today, most Americans are being diagnosed far later than they should be.
In Alzheimer’s disease, early intervention is everything
The status quo in Alzheimer’s care is failing. Without timely diagnosis, evidence-based treatment options, and adequate care, unpaid caregiving has become the default plan, and the best people can hope for. Behind this system failure is the nihilistic view that change isn’t justified because we can’t do anything for patients. That’s simply not true.
Today we know enough to dramatically improve Alzheimer’s care. Early diagnostic tools are improving at a pace we’ve never seen before. We can reduce risk. We have enough evidence to offer patients treatment, and treatments will only get better. We can put people in GUIDE model programs, a Centers for Medicare & Medicaid Services (CMS) pilot that supports people with Alzheimer’s and their caregivers.
All of it depends on earlier diagnosis and intervention – we need to catch people earlier with Alzheimer’s disease, when clinicians are best positioned to provide broad options.
Early intervention isn’t a science problem, it’s a systems problem. Research consistently documents a 17-20 year gap from the time innovations are clinically ready, to when they become routine practice. People living with Alzheimer’s today can’t afford to wait that long.
Change is hard, but it’s happening
Changing the American health care system is structurally difficult; resource constraints are real, complexity is high, and no single lever can transform care overnight.
But change is possible. Implementation science exists precisely to close the gap between what we know and what patients actually receive. It’s the study of how to facilitate the uptake of evidence-based practices into routine healthcare. And through my work with the Davos Alzheimer’s Collaborative Health System Preparedness (DAC-SP) program, I see these principles put into action every day.
At DAC-SP, we engage health system leaders and policymakers to improve care pathways, and work closely with frontline clinicians to understand the practical realities involved. We have united 35 health systems across the U.S., and an additional 45 globally, around improving dementia care. Early results are promising: among sites with complete data, a third have already reached “hall of fame” status, sustaining improvements over time, expanding access without adding staff, and connecting the right patients to the right providers at the right time.
What the best of Alzheimer’s care looks like
I’ve seen the best models of Alzheimer’s care across the country, and have learned a lot about what it takes to raise standards. While good looks different depending on the setting, the bright spots tend to fall into three categories:
Large health systems that are focused on the role of the Medicare Annual Wellness Visit in primary care, are increasing detection of cognitive impairment during these visits. While this has been and remains a persistent challenge, our exemplary sites have demonstrated meaningful clinical uptake and sustainability even with resource constraints.
Specialty centers increasing access to diagnosis have found ways to dramatically increase patient throughput and reduce wait times from over a year to a matter of weeks. Delayed diagnosis can cause people to miss the window for treatment eligibility, so getting people into specialty diagnostic settings faster has an enormous impact on a patient’s options for care.
Community health centers and other safety net providers, operating in some of the most under-resourced settings in the country, are among the strongest performers because they are accustomed to collaborative care models, bundled payments, and chronic care management. Their success directly refutes the argument that it’s too hard or too resource-intensive to achieve improvements in care.
Our sites are proof of what works
While others debate whether early detection in primary care is even feasible, our sites are doing it – and publishing proof that shows other systems exactly how to follow:
The University of Kansas Alzheimer’s Disease Research Center (KU) is demonstrating a scalable, system-wide model for improving early detection of mild cognitive impairment, Alzheimer’s disease, and dementia in primary care. More than 60 primary care providers (PCPs) across the state are using innovative blood biomarker tests in familiar primary care workflows. KU also redesigned its referral pathways for memory care. By redesigning referral pathways, KU also increased memory clinic throughput by 60% without hiring more neurologists, or seeing a drop in quality metrics.
Emory is a leading academic medical center in Atlanta, demonstrating a model that works in complex health systems. They have had incredible success reducing wait times for diagnosis and treatment down from 17 months to as little as 6 weeks. Wake Forest has also made significant progress in wait times.
The University of Washington’s Cognition in Primary Care program deployed a practical toolkit and training across 94 primary care providers at 14 clinics serving 330,000 patients in Western Washington state. The program achieved a seven-fold increase in cognitive testing and more than doubled the rate of diagnosis of mild cognitive impairment and dementia. UW is now partnering with the American Academy of Family Physicians to offer the program to its 130,000 members nationwide.
The evidence is clear. It’s time to act
The examples above aren’t just outliers. They are demonstrations that better care is achievable now, and at scale, with the right infrastructure and the right commitment.
My grandfather Gus deserved better care, and didn’t get it. The question isn’t whether we can build it. We already are. The question is how many more families we’re willing to let down while we wait to raise the standard.
Tim MacLeod, PhD, is Executive Director of the Davos Alzheimer’s Collaborative Health Systems Preparedness (DAC-SP) program.