I study the people who hold families together when the signs of dementia appear: the spouses, adult children, friends, neighbors and chosen family who become caregivers, often without warning.
In my work, I’ve learned that Alzheimer’s disease does not affect only the person experiencing cognitive changes. It reshapes the lives of caregivers who become responsible for helping someone navigate daily life, healthcare, finances, safety, transportation, housing and long-term planning.
A caregiver might notice a loved one missing appointments, forgetting familiar tasks, or becoming confused in familiar places. By the time the situation becomes impossible to ignore, many families are already in crisis.
It does not have to happen that way.
Thanks to advances in science, blood-based screening tools can now help detect Alzheimer’s disease earlier. But those tools only help families who can access them.
The Alzheimer’s Screening and Prevention Act, known as the ASAP Act, would create a Medicare coverage pathway for blood-based screening tests for Alzheimer’s disease and related dementias. The bill is focused on early screening and detection, not replacing clinical judgment or comprehensive evaluation. In practical terms, it would help Medicare policy keep pace with emerging tools that may identify concerns earlier.
That signal can matter enormously for caregivers.
When Alzheimer’s disease or a related dementia is detected earlier, families may have more time to talk with healthcare providers, understand what may be happening, identify support systems, discuss care preferences, complete legal and financial planning, and prepare for changes before decisions are forced by a hospitalization, safety issue, wandering incident, medication crisis or caregiver burnout.
For caregivers, time is everything. Time can determine whether a person participates in their own planning, whether a caregiver has the information needed to arrange support and whether a family is planning carefully or reacting in panic.
The need is real. According to the Alzheimer’s Association, more than 12 million Americans provide unpaid care to family members, friends and others living with Alzheimer’s disease and other dementias. Behind that number are people managing medications, attending appointments, coordinating care, missing work, absorbing stress and trying to preserve dignity for someone they love.
For LGBTQ caregivers, the need for time can be especially urgent. Many LGBTQ people care for partners, friends or chosen family members who may not have automatic legal recognition in healthcare, insurance or long-term care systems. That makes advance planning — health care proxies, powers of attorney, care preferences and trusted decision-makers — even more important.
Research published in Alzheimer’s & Dementia in 2025 found that LGBTQ dementia caregivers were less likely to receive support from family, co-workers and neighbors, and were also less likely to receive LGBTQ-affirming communication from providers. Those barriers can compound for LGBTQ caregivers who also hold other marginalized identities, in terms of racial/ethnic minority background or disability status for example.
In my own research, I have heard this theme again and again: the more identities a caregiver holds that our systems were not built around, the heavier the burden becomes. These are not separate communities. They overlap. A queer caregiver may also be a person of color or living with a disability. Every additional barrier can make it harder to get information, be recognized and plan in time.
That is why earlier detection matters. It gives caregivers and families a better chance to put the right documents, supports and conversations in place before the system forces them to react under pressure.
Passing the ASAP Act would be a practical step toward earlier detection and better preparation. It would not replace providers, specialists, caregivers or community-based supports. But it would help ensure that Medicare beneficiaries and their care networks are not left waiting for coverage policy to catch up with science.
We should commend ranking member U.S. Rep. Richard Neal, D-Springfield, for his leadership on the House Ways and Means Committee, which recently voted to advance the ASAP Act, giving Congress an important opportunity to move this conversation forward. The bill comes as families, caregivers, clinicians, researchers and aging-service professionals are all asking how the healthcare system can respond earlier and more effectively to Alzheimer’s disease and related dementias.
A better dementia-care system must make sure patients have access to early detection tools. It must also include caregiver support, culturally responsive care, access to services, legal and financial planning, long-term care options and attention to communities that have too often been left out. Caregivers need more than crisis response. They need time, information and support.
Congress should pass the ASAP Act this year to give caregivers something they urgently need: more time.
Krystal Kittle, Ph.D., is assistant professor of community health education at UMass Amherst School of Public Health and Health Sciences. Her research focuses on Alzheimer’s disease and related dementias caregiving experiences.