With their healthspan eroding in real time, Vallige Founder and CEO Matt Tullis explains why caregiver burnout is longevity’s hidden crisis.
In the world of dementia care, “patient” is a word people try not to use. Hospitals, day programs, and assisted-living teams have largely retired it. It can put the person living with dementia (PLWD) on the defensive, and the case for retiring it is one of dignity. I want to use “patient” once, on purpose, because avoidance is part of the story I am trying to tell.
When a family member is diagnosed with dementia, the medical system has a clear protocol. A primary care physician, a neurologist, and sometimes a geriatric psychiatrist enter. The diagnosed person gets a chart and a treatment plan. What the system does not do is open a second chart for the person standing next to them who is about to spend years on call, often alone, often invisible: the spouse, an adult child, a sibling, or even the daughter-in-law.
That second person is also a patient, but we just haven’t learned to treat them as one. The language we use to protect the dignity of the first one may be quietly reinforcing the silence around the second.
A crisis hiding inside another crisis
More than seven million Americans are living with Alzheimer’s today, with an estimated 55 million people affected worldwide. More than half a million Americans are newly diagnosed with dementia each year, and that figure is projected to roughly double by 2060.
We hear a lot less about the people caring for them. A landmark study by Schulz and Beach found that spouses who reported emotional or physical strain from caregiving were 63 percent more likely to die within four years than non-caregiving peers.
The result is a public health problem hiding inside a public health problem. For every dementia diagnosis, the system is quietly sentencing a second person into a chronic, high-risk role and then watching their health erode in real time without intervening. I have witnessed this first-hand with my dad.
What current care models miss
Most of the technology built around dementia in the last decade has been centered around the diagnosed person: tracking, monitoring, fall detection, medication adherence. These are useful. They are also designed to make the caregiver more aware of what is happening, not necessarily to reduce the load the caregiver is carrying.
That is the gap. Awareness is not relief. A wearable or camera that alerts a daughter every time her mother enters the kitchen does not give the daughter back her sleep or her own doctor’s appointment. The first weeks you check every alert, eventually you tune them out, and the burden becomes ambient rather than intermittent.
Caregivers consistently say they need the thing the system is worst at giving: a break. It is worth reading the Schulz and Beach finding carefully: the 63 percent excess mortality applied specifically to spouses who reported emotional or physical strain. It is a finding about self-appraised stress. A recent daily diary study by Cheng and colleagues (2024) showed that respite services significantly reduce how much stress caregivers actually feel on the days they are delivered. We may not have direct evidence that respite lowers caregiver mortality, but we know it reduces the chronic stress that drives it. Yet we have built almost no infrastructure to deliver that relief consistently. Non-profit organizations like Hilarity for Charity are filling a gap the care system itself should own.
Why caregiver decline goes unseen
Only about 17 percent of family caregivers are up to date on their own routine health screenings. They are conditioned to deflect: “I’m fine, it’s my wife who needs help,” and the decline is gradual. A missed checkup. A skipped meal. Two glasses of wine that quietly become four.
The same protective instinct that retires the word patient for the diagnosed person makes the caregiver reluctant to claim it for themselves. And existing billing codes pay clinicians to assess how well a caregiver is doing the job. None pay them to treat the caregiver as a patient.
What I’ve watched happen at home
My mother was diagnosed with dementia in 2018. My father has been her primary caregiver ever since. I have watched him, over eight years, become extraordinary at the job and quietly worse at being a person in his own life. He sleeps less. He eats worse. The moments of stress and uncertainty are not occasional, they are constant.
He is one of millions, and the pattern is universal yet largely missing from the technology being built around them. That’s what made me start looking for research that could help him, not just my mom.
Biomarkers and AI Have Changed the Game
Vocal and facial biomarkers can now detect early signs of agitation, fatigue and cognitive shift in both caregiver and PLWD. Agentic AI can provide companionship and reminiscence on demand, redirecting the repeated calls and panic moments that drain caregiver energy.
The promise is not that AI replaces human care. The promise is that it absorbs enough of the emotional and logistical load to keep human care possible and to catch the caregiver before they crash.
What Needs to Change in the Next Decade
A couple of shifts need to happen. Dementia has to be formally recognized as a two-person illness, with the caregiver inside the care plan, not adjacent to it. And technology investment has to move from surveillance toward support.
The societies that figure this out first will both save caregivers’ lives and ensure there is someone to provide care at all.
About Matt Tullis 
Matt Tullis is the Founder and CEO of Vallige, a Reno, Nevada-based software company dedicated to unpicking the complexities of dementia care. After years of looking under the hood of current care models while supporting his father in caring for his mother, Matt now focuses on building intelligent systems that preserve the health and resilience of caregivers of people living with Alzheimer’s and other forms of dementia.