Towards Reimagining Care
To catch Alzheimer’s early, we need a health system update.
By Jeff Burns, MD, MS
There has never been a more hopeful time for Alzheimer’s care. Blood-based biomarker tests have the potential to transform how we diagnose the disease, and emerging therapies make it possible to intervene at ever-earlier stages. But to make these gains count for the millions of Americans living with Alzheimer’s, we have to rethink how care is delivered.
Across the country, health systems are lagging on Alzheimer’s care: long waits for memory clinics, limited neurologist availability, and these problems compound in underserved areas. In my home state of Kansas, patients can wait up to 12 months to see a neurologist. Every month of waiting is one they can’t spend planning for or getting care.
On top of this, the need for Alzheimer’s care is growing faster than our system can absorb. As my colleagues and I write in a recent JAMA Neurology article, “access at scale will not be achieved within current care models.” The arrival of new tools gives us an unprecedented opportunity to redesign care, with models built to reach people in time and at scale.
Rethinking Alzheimer’s care means moving towards system-level models and team-based care. Instead of looking to memory clinics as a one-size-fits-all for cognitive concerns, we need purpose-driven care pathways to match each patient’s complexity and needs. This requires a coordinated approach spanning primary care, general neurology, and memory specialty care.
So where to start? In the paper, we focus on two major opportunities for change.
First: redefine the memory clinic around its functions
A memory clinic has several functions, including diagnosing complex and atypical cases; delivering disease-modifying therapies; and providing long-term patient and caregiver support. By defining clinic pathways to match these functions, we can better match services to patient needs, and conserve limited resources. We define five purpose-built sub-clinics:
Complex diagnostics: evaluating atypical, early-onset, or complex cases
Anti-amyloid treatment: eligibility, prescription, and safety monitoring
Memory care e-consult: asynchronous specialist input to primary care and neurology
Comprehensive support: ongoing patient and caregiver support
Prevention and monitoring: support for individuals with elevated disease risk
Three of the five pathways (all except for complex diagnostics and e-consults) can be led day-to-day by advanced practice providers – nurse practitioners and physicians assistants who are trained to work from clear protocols, and to escalate as needed. This team-based approach allows a fixed number of specialists to reach patients more effectively. And emerging digital tools promise to further strengthen team-based approaches to care.
Second: scale diagnosis through primary care
Now that an Alzheimer’s diagnosis can be supported by a simple blood test, primary care can become a high-quality entry point for Alzheimer’s diagnosis and care. Tools like electronic health record-embedded workflows and decision support can equip clinicians in primary care with “just-in-time” guidance at the point of care.
Many primary care providers report lacking confidence and training to diagnose and manage Alzheimer’s and dementia. By promoting standardization and providing clear escalation pathways for handling uncertainty, these tools can increase clinicians’ confidence, helping them make Alzheimer’s care routine.
As we seek to embed new tools in the primary care setting, quality assurance is a must. Additionally, new payment models are needed to support team-based care, including flexible neuropsychological assessment, longitudinal care coordination, and caregiver support. Updated policy and reimbursement guidelines are needed to pave the way for these changes to reach scale throughout the health care system.
Progress is underway, now policy needs to catch up.
My colleagues and I closed the paper with a call to action:
“Biomarkers and emerging therapies are enabling earlier Alzheimer’s diagnosis and treatment, but specialist-dependent models cannot meet the population need. The new era requires a system-level redesign that pairs purpose-designed memory clinic functions with standardized front-line care supported by EHR workflows, decision support, and escalation pathways. Delivery pathways must be linked to measurable quality expectations and payment structures that make team-based dementia care sustainable.”
I am hopeful because I see health systems making progress on these care models. In our pilots at the University of Kansas, a trained nurse can complete a cognitive assessment in a primary care office, with results ready for a clinician to deliver a diagnosis within one week.
Jeff Burns is co-director of the University of Kansas Alzheimer’s Disease Research Center and director of the Memory Care Clinic at The University of Kansas Health System.