The landscape has changed dramatically in the years since the National Active and Retired Federal Employees Association (NARFE) started supporting the Alzheimer's Association in 1983. At the time, scientists knew virtually nothing about the "peculiar disease" Dr. Alois Alzheimer identified in 1906 — who is most likely to get it, what goes on inside the brains of people who have it. The terrible toll the disease would take on individuals, society and our national economy had not yet been contemplated, much less calculated.
Thanks to the vision and generosity of NARFE members and tens of thousands of other people across the U.S., scientists have made tremendous strides in a relatively short time. The U.S. Food and Drug Administration recently approved two treatments that address the underlying biology of Alzheimer's, and more are in the pipeline. Blood tests for Alzheimer's disease will likely be available in doctors' offices within a few years.
"An exciting new era of Alzheimer's treatment and care has begun," says Maria C. Carrillo, Ph.D., the Association's chief science officer. "Steadily growing investment in research has led to treatments that can give people with early Alzheimer's more time to live independently and participate in activities that are meaningful to them. The field has unprecedented momentum, and we have never been more optimistic for the future."
Progress is also being made in the realm of access to quality care. The Centers for Medicare & Medicaid Services (CMS) recently agreed to provide Medicare reimbursement for approved Alzheimer's treatments as long as the patient's physician enrolls them in a registry. CMS has also announced an initiative to test a new care model that would enable affected individuals and their caregivers to more seamlessly navigate health care and social support systems and receive more timely dementia care.
"We have advocated for this approach for years, believing it the key to addressing systemic challenges faced by those with dementia, their families and those who provide them with care and support," says Joanne Pike, DrPH, Alzheimer's Association president and CEO. "We look forward to continuing our work with both Congress and CMS to continue advancing innovative policy solutions to provide high-quality dementia care for all those impacted by Alzheimer's and other dementia."
Despite positive developments, many challenges remain. Today's new treatments will not work for everybody, and millions of Americans are living with dementia that has progressed beyond the point where today's new treatments could make a difference. More than 11 million people now serve as caregivers to family members and friends living with dementia.
"There have been tremendous steps forward, but we won't rest until everyone living with Alzheimer's — at any stage — can get the treatment, care and support they need and deserve," Dr. Pike says. "We are so grateful for the extraordinary and continued support of NARFE as we work to achieve our vision of a world without Alzheimer's and all other dementia. Thanks to you, we are getting closer every day."
In 2020, the Alzheimer’s Association created an exclusive web portal that gives NARFE members streamlined access to world-class care and support resources. These include help for caregivers, information about Alzheimer's and all other dementia, and help making local connections. A new section on Treatments and Progress has been added to the NARFE portal, with links to Navigating Treatment Options, Questions for Your Doctor and more.