A joint blog post from Rachel Conant, executive director of the Alzheimer’s Impact Movement (AIM), and Jason Resendez, president and CEO of the National Alliance for Caregiving (NAC)
Nearly 13 million Americans are caring for a loved one with Alzheimer’s or another dementia today. Fifty-nine percent of them report high to very high emotional stress, and about a quarter are also raising or caring for a child while they do it. This is not a small or occasional role. It is, for millions of families, daily life.
By the time most families get a diagnosis, they have often spent months or years wondering whether what they’re seeing is normal aging or something more. That waiting period is especially hard on caregivers, who are often managing real changes in a loved one without a name for what’s happening or a plan for what comes next.
That’s why the Alzheimer’s Impact Movement (AIM) and the National Alliance for Caregiving (NAC) are asking Congress to support dementia caregivers and accelerate access to earlier detection by passing the bipartisan Alzheimer’s Screening and Prevention (ASAP) Act (H.R. 6130/S. 3267). Researchers have developed blood tests that can detect Alzheimer’s biomarkers years before symptoms appear. But under current law, Medicare cannot cover a screening test for any disease that causes dementia. That’s not a coverage decision — it’s a legal barrier. The ASAP Act would fix it, giving Medicare the authority to cover these tests through its existing evidence-based process, without mandating coverage outright.
We’ve been here before. Nearly 40 years ago, Medicare didn’t cover mammograms, so most insurers didn’t either, and therefore most women didn’t get screened. Once Congress acted, screening rates rose, breast cancer deaths dropped significantly, and early detection became the standard of care. Alzheimer’s is at its own mammogram moment now.
Congress applied this exact model to cancer earlier this year through the MCED Act, creating a Medicare coverage pathway for blood-based cancer screening, and the ASAP Act would do the same for Alzheimer’s. The need is urgent. Today, fewer than 10% of people living with mild cognitive impairment — the earliest stage of Alzheimer’s when treatments work best — ever receive a diagnosis. The rest slip through, and it’s their families who absorb what follows.
For dementia caregivers across the nation, getting this right is essential. Dementia caregivers are 1.5 times more likely than other caregivers to report substantial physical difficulty providing care. Seventy-four percent say they’ve been somewhat to very concerned about maintaining their own health since becoming a caregiver, and 27% say they’ve delayed or skipped things they should do to maintain it.
The financial toll is just as real: nationally, unpaid dementia caregivers provide care valued at $446.3 billion a year, and 70% of the total lifetime cost of caring for someone with dementia falls on families, through out-of-pocket health and long-term care expenses or from the value of unpaid care. Much of this toll builds during the very period when families have the least information — the months or years before a diagnosis, when a caregiving role is already underway but there is no name for it and no plan to meet it.
Earlier detection cannot undo the demands of caregiving. But by replacing that uncertain stretch with an earlier answer, it can give caregivers more runway to arrange support, adjust routines and protect their own health and finances before the role intensifies — rather than absorbing all of it at once, in crisis.
AIM and NAC are urging Congress to act now on the ASAP Act. On September 29, we’re hosting a webinar on family caregivers and this critical bipartisan legislation, where we’ll dig into what earlier detection could mean for the millions of Americans providing unpaid care today, and how advocates can help move this legislation forward.
Register for the September 29 webinar today.