This is an inflection point for the global dementia movement. Science has brought us here. There are disease modifying treatments, pharmacological interventions that can slow the progression of disease. Alzheimer’s is moving from the paradigm of the untreatable, to the treatable. This is a profound shift. And the lesson from other diseases is once initial treatments emerge, new and improved ones follow, often at pace. Success breeds success. Over the next decade, a reasonable bet is a growing pipeline of therapies: more effective drugs, targeting more types of dementia, with greater benefits for patients.
We are also seeing a revolution in diagnosis. Over the last couple of decades, we have moved from diagnosis that relied on post-mortem confirmation, to an era of accurate but costly diagnosis often in specialist settings and largely available only in high income countries. Now, blood-based biomarkers are on the cusp of entering routine clinical practice. While digital tools are being developed that at the very least will identify early cognitive changes.
Dementia has long been burdened by public fatalism. But growing public interest in brain health reflects a shift in mindset. Science is deepening our understanding about risk factors, and randomised clinical trials are demonstrating how we could reduce risk at an individual level. With quality implementation science, we can translate these findings from trial environments into public policy.
This could be characterised as the “medicalisation” of dementia. Public health systems worldwide strive to prevent disease, diagnose disease (including early screening) and treat disease and provide support and care through to end of life. While dementia has always some of these points, treatments change priorities.
The advocacy imperative
Science has brought us to this point, and it will ultimately dictate our pace. The pace of innovation in prevention, diagnosis, and treatment sets the pace of change for patients. A key public policy challenge is to cultivate a climate for innovation that drives ultimately drives that pace of change. Academic and funding disruptions, particularly in the United States, put the pace of progress at risk.
But while science may drive progress, it is policymakers at the country level who hold the power to deliver change. This is where advocacy’s role is pivotal. With every innovation policymakers have a choice: act now or wait? Will they fund prevention programmes, pay for diagnostic tools, or approve new treatments?
This inflection point is equally profound for the dementia advocacy movement. This movement is wider than patient organizations. Progress is made by a broad community: from people living with dementia and their caregivers to clinical researchers, trial participants and basic scientists. Even if at the national level advocacy organizations are the organizing fulcrum.
This is the era of Delivering Change: Advancing Advocacy in the Age of Treatments. How then does the global advocacy movement respond to this moment? What coalition is needed from scientists through to patients to collaborate, to share knowledge, to develop best practice and to deliver change? Learn how we are shaping the future of dementia advocacy and discover opportunities to contribute: at worlddementiacouncil.org/deliveringchange.
Lenny Shallcross
Executive Director World Dementia Council