This week, I am in Washington D.C. asking Congress to act on Alzheimer’s Disease.
Here is why I go.
I have worked in senior care for thirty years. I do not have a personal family member living with Alzheimer’s Disease.
I go anyway.
Because in thirty years, I have watched this disease take people. Not all at once. Slowly. First a word, then a name, then a face. I have sat with families who are grieving someone who is still alive, who still shows up at the dinner table, who still holds their hand… but who no longer knows who they are. That particular kind of loss does not have a clean name. And it does not end.
Alzheimer’s is one of the most expensive diseases in America. Caring for people with Alzheimer’s and other dementias cost the United States an estimated $409 billion in 2026 alone, and that number is projected to reach $642 billion by 2050.¹ Nearly two-thirds of those costs will fall on Medicare and Medicaid. The financial weight on families is just as staggering. Dementia caregivers bore an average of $12,388 in out-of-pocket costs in 2021, on behalf of the person they were caring for.² Many cut back on savings. Many cut back on food.
These families are exhausted. They are often too depleted to make the calls, write the letters, or book the flights. So I go.
This week, I am in Washington D.C. alongside more than 1,000 volunteers from across the country, every one of us meeting with our own representatives and senators to ask for the same things. I am personally meeting with Senator Ron Wyden, Senator Jeff Merkley, and Representative Maxine Dexter on behalf of Oregon families living with this disease. Here is what we are asking for.
What We Are Asking For
1. Allow Medicare to Cover Alzheimer’s Blood Tests (The ASAP Act)
Researchers have developed blood tests that can detect Alzheimer’s before symptoms even appear. Brain changes from Alzheimer’s can begin as early as 20 years before onset.¹ Finding it early means more time for treatment, more time to plan, more time to enroll in clinical trials. Early diagnosis and treatment is the gold standard for diseases like cancer, heart disease, and diabetes. It should be the standard for Alzheimer’s too.
The problem is a legal one, not a scientific one. Under current law, Medicare is prohibited from covering FDA-approved screening tests unless Congress specifically provides permission. Congress has already done this for cancer screening. The bipartisan Alzheimer’s Screening and Prevention (ASAP) Act (S. 3267 / H.R. 6130) would do the same for Alzheimer’s, permitting Medicare to cover routine blood-based screening tests once the FDA clears them.¹
Think of what happened when Congress enabled Medicare coverage for routine mammograms. Screening rates soared. Breast cancer deaths dropped significantly. This is that moment for Alzheimer’s. We have the science. We need Congress to remove the barrier.
Fewer than 10% of people receive a diagnosis of Alzheimer’s when they have mild cognitive impairment, the phase when symptoms first emerge and they are eligible for treatment.¹ Nearly 4 in 5 Americans say they would want to know their Alzheimer’s diagnosis while symptoms are still mild. More than 9 in 10 say they would want a simple test to allow for early treatment.¹ The public is ready. Congress needs to act.
2. Train the Doctors Who Will Make the Diagnosis (The AADAPT Act)
Even when the tests exist, someone has to interpret them and have the conversation. Right now, 85% of Alzheimer’s diagnoses are initially made by primary care providers. But 69% of those providers say they received little or no dementia training in medical school, and 39% say they are not confident making a diagnosis.³
Today, only half of those living with Alzheimer’s are diagnosed at all. Of those who are diagnosed, only half are actually told.
That gap is not acceptable. Not when we have the tools to do better.
The bipartisan Accelerating Access to Dementia and Alzheimer’s Provider Training (AADAPT) Act (H.R. 3747 / S. 4036) would expand access to virtual dementia education and training programs for primary care providers, specifically reaching rural, frontier, and underserved areas where physicians are already stretched thin.³ Better-trained providers mean better outcomes, earlier intervention, and lower long-term costs through reduced unnecessary hospitalizations.³
3. Recognize What Caregivers Are Actually Doing (The Credit for Caring Act)
Nearly 13 million Alzheimer’s caregivers provide more than 19 billion hours of unpaid care every year. The value of that care exceeds $446 billion annually.² That is not a rounding error. That is the backbone of how this country cares for people with dementia, and it is mostly invisible.
More than 1 in 4 dementia caregivers are part of the sandwich generation, caring for both an aging parent and a child at the same time.² More than 57% of employed caregivers report having to arrive late, leave early, or take time off to fulfill their caregiving duties. Nearly 1 in 5 had to reduce their hours of work.²
The bipartisan Credit for Caring Act would create a non-refundable federal tax credit of up to $5,000 per year for eligible family caregivers to help offset the costs of respite care, transportation, and lost wages.² It will not solve everything. But it is a real, concrete acknowledgment that what these families are doing has value, and that the country sees them.
4. Keep Funding the Research (We Are Not Finished)
Thanks to years of advocacy, federal Alzheimer’s and dementia research funding has reached an all-time high. The NIH is now investing approximately $3.9 billion annually in Alzheimer’s and dementia research.⁴ That investment is producing results. But staying on the path to a cure requires sustained commitment.
The NIH’s own Alzheimer’s bypass budget calls for an additional $187.21 million in research funding for FY 2027.⁴ Congress must also continue funding the BOLD Infrastructure for Alzheimer’s Act, which is building public health infrastructure across the country to increase early detection, reduce risk, and prevent avoidable hospitalizations.
We are in a race against a disease that is projected to double to nearly 14 million Americans by 2060.³ We do not have the luxury of slowing down.
Democracy Is a Verb
We like to think of America as a democracy. But it is really a democracy of the people who choose to get involved. Alzheimer’s research gets funded when advocates show up. Policies change when constituents make the call.
This week, more than 1,000 of us are showing up in Washington D.C. to make the case for the people who cannot be there themselves. The residents who can no longer recognize their families. The caregivers who are too tired to make one more phone call. The families mourning someone who is still alive.
I go because memories matter. And because someone has to speak when others no longer can.
If you want to add your voice, visit alzimpact.org to contact your own representatives. It takes less than five minutes and it matters more than most people realize.
Citations
1. Alzheimer’s Impact Movement (AIM) Fact Sheet: Alzheimer’s Screening and Prevention Act, March 2026. alzimpact.org
2. Alzheimer’s Impact Movement (AIM) Fact Sheet: Credit for Caring Act, January 2025. alzimpact.org
3. Alzheimer’s Impact Movement (AIM) Fact Sheet: AADAPT Act, March 2026. alzimpact.org
4. Alzheimer’s Impact Movement (AIM) Fact Sheet: Fiscal Year 2027 Alzheimer’s Research Funding, April 2026. alzimpact.org
