“Caregiving is a full-time job that can last for a decade or more,” says Lesser. “It’s fundamentally unjust to expect women to endure the bulk of this emotional, physical and economic toll. That’s why WomenAgainstAlzheimer’s, a network of women advocates, launched the We Won’t Wait campaign to draw attention to this crisis.”

Approaching a breakthrough

For over a century, patients and caregivers have faced Alzheimer’s disease with little hope. But Alzheimer’s research is at a tipping point. An emerging class of investigational medicines, called disease-modifying therapies, may actually alter the underlying cause of the disease – not just treat symptoms, as current medications on the market do. If approved by the FDA, they may be available within the next five years.

This could revolutionize Alzheimer’s, if our society and health care system undertake immediate changes. Researchers believe disease-modifying therapies will be most effective when introduced early, but currently, many barriers prevent timely detection and treatment.

Though the hallmarks of Alzheimer’s can be identified up to twenty years before onset, the average patient is not diagnosed until four-and-a-half years after symptoms appear. Worse, 50 percent of those who meet the criteria for Alzheimer’s have never received a diagnosis – often because of patients’ and physicians’ reluctance to discuss the disease.

“A groundswell of action is required to ensure the nation’s systems effectively serve families, caregivers and women.”

Initiatives like the Alzheimer’s Readiness Project, organized by Eli Lilly and Company, are pursuing both high-level outreach and public awareness to address these gaps. “Through the Project, we are engaging with policymakers to ensure that the health care system is ready for these potential new medicines,” said Phyllis Ferrell, the company’s vice president and Global Development Leader for Alzheimer’s disease. “Simultaneously, we are building awareness to empower individuals. With the right policies in place, you can be your own best advocate.”

The role of women

As the national conversation progresses, individuals need to push for advances in their networks and communities. Women – affected, providing care or at-risk – will be critical voices. Far-reaching change starts with a few simple steps:

First, women should talk about Alzheimer’s with their friends, families and colleagues. Honest and informed conversations lay the groundwork for diagnosis by fighting stigma and fear. They generate recognition of potential symptoms and subsequent action. Though often dismissed as “typical aging,” these signs can serve as the critical red flags for effective early intervention.

Further, women can drive forthright discussions with physicians. They should ask about their concerns, new treatments and diagnostic tools, and possible clinical trial enrollment. Improving doctor-patient relationships on this topic will pave the way for future therapies’ real-world impact.

Finally, women must call for Alzheimer’s as a priority across society, policy and business. The current national economic and health burden is unsustainable and growing. A groundswell of action is required to ensure the nation’s systems effectively serve families, caregivers and women.

These discussions – in living rooms, board rooms and doctor’s offices – will be invaluable in the near future. Reshaping the culture and processes now will open the gateways for tomorrow’s medicines to help patients and caregivers fight back against this tragic disease.