Even when cognitive impairment is identified in primary care and referral is initiated, many patients do not complete diagnostic evaluation or progress to treatment discussions.1 Attrition across the Alzheimer’s disease care pathway can occur for logistical, emotional, and system-level reasons, resulting in delayed diagnosis and reduced opportunity for early intervention.2,3
After referral, patients and families may encounter appointment delays, transportation barriers, or uncertainty about the purpose of specialist evaluation.3 In some cases, symptoms may be minimized or attributed to normal aging, particularly in communities where misconceptions about dementia persist.2 These beliefs can contribute to delayed engagement with specialty care and reduce timely access to diagnostic confirmation.
These gaps are especially relevant in underserved populations. Despite higher Alzheimer’s disease and related dementia burden in Black and rural populations, these groups remain underrepresented in diagnostic evaluation pathways and clinical research participation.2,4 Primary care clinicians are often the first and most consistent point of contact and therefore play a key role in addressing misconceptions, clarifying the distinction between normal aging and disease, and encouraging early engagement with evaluation and research opportunities when appropriate.1,2
Importantly, patients from racial and ethnic minority groups and rural communities have demonstrated willingness to participate in clinical research when appropriately informed and when culturally sensitive communication is used.2,5 This presents an opportunity for primary care to support more equitable access to clinical trials, including studies evaluating disease-modifying therapies, by initiating early conversations and facilitating informed referrals.
As diagnostic pathways evolve, improved coordination between primary care and specialty services may help reduce loss to follow-up after referral. Clear communication about next steps, anticipated timelines, and the purpose of further testing can support patient and caregiver engagement throughout the diagnostic process.1,6 When available, streamlined biomarker-based approaches may further reduce uncertainty and shorten time to diagnosis, enabling more timely consideration of emerging therapies such as amyloid-targeting monoclonal antibodies in appropriately selected patients with early symptomatic disease and confirmed amyloid pathology.6
Strengthening continuity after referral, while addressing misconceptions and improving equitable access to research opportunities, represents an important opportunity to improve outcomes and ensure that earlier detection efforts translate into meaningful clinical action.
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