Making CHANGE for Women Living with Alzheimer's

I always say my Alzheimer’s journey began 10 years ago with my mother’s diagnosis – but in reality, it began much earlier: with the confusion and stress before diagnosis. I spent years struggling to figure out what was happening to my mother and find the care and resources that might keep her safe. Sadly, little has changed for the millions of families and women navigating diagnosis and care pathways. But we now have an opportunity to transform these pathways with an urgently needed bill: the CHANGE Act.

This bipartisan legislation would support family caregivers, drive early diagnosis, and speed progress toward a cure. Formally known as the Concentrating on High-Value Alzheimer’s Needs to Get to an End (CHANGE) Act, it was developed in close partnership with UsA2 to address the most pressing issues for families struggling with the disease.

WomenAgainstAlzheimer’s supports the CHANGE Act because it is critical for women’s health and economic equality. Women are twice as likely to develop Alzheimer’s and to care for someone with the disease. As caregivers, women face severe strains on our health, careers, and finances. Caregiving often requires more than 60 hours per week – a burden that can last for a decade or more. As I’ve seen firsthand, this turns your life upside down.

The CHANGE Act would address some of the key challenges that women caregivers face. Diagnosis remains one of the most difficult parts of the Alzheimer’s journey. In part, this is because doctors lack standardized diagnostic tools and incentives for diagnosis. At the same time, there are few starting points or guideposts to easily find resources on how to provide care.

This means that women are left to navigate a medical and care system that can be complicated, confusing, and frustrating. This not only increases the stress of caregiving, it also slows research: 85% of Alzheimer’s clinical trials are delayed due to enrollment problems. You can’t participate in a clinical trial if you don’t know you have Alzheimer’s.

The CHANGE Act would address these deep problems. In particular, the bill would:

  • Drive early, accurate diagnosis: The bill would require CMS to find a reliable tool to detect cognitive impairment and provide doctors with incentives for early diagnosis. This would transform the health care system’s approach to Alzheimer’s detection – empowering families with early, accurate diagnosis.
     
  • Speed clinical research: Improving diagnosis would also boost clinical trials, as people with Alzheimer’s and their families would be able to make more informed decisions. This would accelerate progress toward new treatments and, ultimately, a cure.
     
  • Support family caregivers: The bill would create a coverage and payment model that provides caregivers with dementia care training and certification. These training courses would give caregivers a place to turn for guidance and support, reducing stress and care burden.   
     
  • Test a comprehensive continuum of care: Modeled on the Programs of All-inclusive Care for the Elderly (PACE), the CHANGE Act would also use CMS authority to address the care needs of caregivers and people with Alzheimer’s.

Now is the time for action. Join us in supporting the CHANGE Act. This legislation would dramatically increase our country’s response to the escalating Alzheimer’s crisis for American women.

If these measures had existed years ago, I believe my caregiving journey would have been less confusing and better supported. Let’s achieve it now.

You can support the bill by:

  • Adding your name to our sign-on letter
  • Sharing this social card with your networks
  • Attending a briefing in Washington, D.C. on June 20th

Together, we can raise our voices to achieve the passage of the CHANGE Act – delivering vital progress for the American women fighting Alzheimer’s every day.

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