There are two patients in every exam room. A physician can only see one of them.

That is how Katie Brandt opens her presentations to neurologists at Harvard Medical School. The other patient – the family caregiver sitting beside the person with dementia – has no chart, no billing code, and no clinical assessment. Yet their physical and mental health directly determines the quality of care their loved one receives.

Brandt is the director of caregiver support services and public relations for the Massachusetts General Hospital Frontal Temporal Disorders Unit, where she works with patients from diagnosis through end of life. She runs the largest FTD caregiver support group in the country. She became a caregiver at 29, when her husband was diagnosed with behavioral variant FTD. She has been caring for her father, a veteran with late-stage Alzheimer's, for 18 years. She has spent more than a million dollars out of pocket on his care alone.

She joined the StartUp Health community for an expert AMA in early June 2026, and for an hour she gave founders a direct line to what caregivers are actually experiencing – and where the biggest gaps remain.

"Unpaid family caregiver" is technically accurate. But it implies that care is free. It is not.

The financial, physical, and emotional costs fall disproportionately on women, who make up two-thirds of family caregivers in the United States. Women caregivers are significantly more likely to live in poverty, reduce hours, or leave the workforce entirely. For young onset caregivers, a 2017 study by Dr. Jim Galvin found costs nearly twice those of later onset cases. Young onset caregivers are still in the workforce when their loved one is diagnosed. They pay out of pocket for coverage so they can keep working. They spend down retirement accounts. Their peers are also employed and cannot provide the informal backup available to retired caregivers.

"Your young onset caregivers are a lot more stressed, they have less bandwidth, they're spending more money, and they're fighting for eligibility," Brandt says. "When they call and say 'my husband is 50, my husband is 42,' the program says, 'We don't provide services to people of that age.'"

When recent Medicaid work requirements came up, Brandt made it personal. At 29, she was caring for two adults with progressive dementia and an infant – fully able-bodied, genuinely unable to work, dependent on Medicaid for herself, her son, and her husband. "I was able to work, but absolutely not able to work," she says. "The horror of thinking that I would have been required to work to have health insurance – I don't even know how I would have made that happen."

When a physician asks a caregiver how their loved one has been sleeping, the answer that comes back is not useful data. It is a narrative – shaped by recent memory, softened by embarrassment, compressed into the first seven minutes of a fifteen-minute appointment. The hard things get saved for the end, right when the clinician is out of time.

Brandt's fix is low-tech: she coaches caregivers to arrive with a written summary, printed and handed to intake staff so the physician can scan it before entering the room. Trends, not just events. Behavior in the context of hydration, sleep, and medication.

The implication for founders is direct. A caregiver arriving without documentation is not a reliable reporter – not because they don't observe carefully, but because verbal recall in a high-stakes clinical encounter is structurally inadequate. Tools that help caregivers capture and organize longitudinal behavioral data are not a convenience feature. They are potentially transformative for the quality of clinical care.

A husband in Brandt's support group couldn't sleep after a 2 AM episode with his wife. He opened ChatGPT, described the situation, received product recommendations and a care protocol, implemented them, and reported back weeks later that his wife had been dry at night. In the same support group, another caregiver told Brandt she couldn't even open the emails Brandt's team sent her. "I love just showing up here because I can ask my one specific question. I trust you guys to give me an answer, and then I go try it."

Those two caregivers represent a real distribution. Younger caregivers want apps. Older caregivers want to be told what to do, by someone they trust, in a small and consistent community. "I really notice it's not uniform across the board that caregivers all have the ability to easily integrate technology," Brandt says. "Our caregivers are just drowning oftentimes, and so it's hard for them to learn something new."

Brandt encourages founders to think across three domains: the medical team, the home, and the community.

The medical domain is an opportunity to connect a fragmented system. Families consistently report that no provider knows what the others are doing. The home is where caregiving infrastructure actually lives – family members, professional aides, and the daily observations that can either flow into clinical care or disappear. Home health aides are underutilized as reporters, and their contribution to the clinical record is both undervalued and actionable.

The community domain is where the most relief often lands. The caregivers Brandt sees doing best consistently name the same things: music, animals, outdoor programs, connection with others who understand what they are going through. Her father lives on a Medicaid bed in an independently owned facility with a three-year waiting list and live piano music at lunch five days a week. When facilities prioritize quality of life, personhood, and dignity, the impact is measurable.

For the first time in Alzheimer's history, there are drugs that slow disease progression. Brandt borrowed an image from Dr. Dan Press: for decades, patients were driving a car with no brake pedal. The new monoclonal antibodies slow things from 40 miles an hour to 30. That is a brake pedal. And it changes how families approach diagnosis.

FDA-approved blood tests are opening earlier conversations. Families previously afraid to raise the topic are now coming to primary care with a script: there are new medications for early stage – what can we do together to monitor my brain health? Brandt has been following one treatment dyad for 18 months and has watched the shift firsthand.

"The new blood test opens the doorway for conversations," she says. "Treatment gives people hope, so they're not as afraid to become connected. And I think it also emboldens me to try to have these care conversations at a much earlier stage with families."

That is the opening the StartUp Health community is building toward – reaching families early, when intervention is still possible, and when the caregiver beside the person with dementia is seen, supported, and treated as the second patient they have always been.

Want to join the conversation? StartUp Health members can attend Expert AMAs live, ask questions directly, and access full recordings through our member app. Learn more and join today.