Caregiving Is a National Crisis We Can't Ignore
Originally published in USA TODAY
Nearly every one of us will provide care or need it. How we respond now will determine whether caregivers shoulder this responsibility in isolation or are finally met with the support they deserve.
By Emma Heming Willis and Steve Schwab, Opinion contributors
Caregiving rarely announces itself with fanfare. It arrives quietly and reshapes daily life.
For many families, it arrives with a diagnosis of dementia – a condition that takes many forms, from Alzheimer’s disease to frontotemporal dementia, or FTD, which my husband, Bruce Willis, lives with.
I (Emma Heming Willis) am caring for a spouse with FTD. Steve Schwab has spent more than a decade listening to and elevating the voices of military and veteran caregivers across the country, many of whom care for loved ones with Alzheimer’s and other forms of dementia.
We've been on different journeys, but with shared truths.
Caregiving for someone with dementia is not simply a set of tasks. It is the invisible labor of managing medications, coordinating appointments, navigating systems not designed with caregivers in mind and adapting – daily – to memory loss, personality changes, disrupted sleep and unpredictable behavior.
It is vigilance layered on top of physical care. It is learning how to keep going when you are exhausted, showing up again and again out of love, even when it feels impossibly hard.
Hidden costs of caregiving: Essential, unpaid labor for loved ones
According to RAND’s most recent nationally representative survey, more than 100 million U.S. adults provide unpaid care to an adult relative or friend with a health or functional need. That same research estimates that of this group, roughly 14.3 million Americans are caring for a wounded, ill or injured service member or veteran.
Dementia, in its many forms, is a growing and significant part of that caregiving landscape. Nearly two-thirds of Americans living with Alzheimer’s disease are women, and about two-thirds of unpaid dementia caregivers are women as well.
In 2019 alone, family members and friends provided an estimated 18.6 billion hours of unpaid care to people living with dementia – care valued at roughly $244 billion. This is essential labor propping up families, health care systems and the economy – largely unseen and uncompensated. Caregiving is essential infrastructure, yet it remains largely invisible.
For one of us, caregiving has meant confronting how unprepared our culture is to support families navigating FTD – a lesser-known form of dementia yet the most common for people under 60, often striking in the prime of their lives.
It brings profound changes to communication, behavior and movement. There is deep love in caregiving, but also grief, exhaustion and fear – grief for what has been lost and for what keeps changing.
Dementia caregivers experience serious psychological, physical stress
Dementia caregiving is a 24/7 responsibility, with little support and few opportunities for rest.
Through the Elizabeth Dole Foundation, we have seen military and veteran caregivers facing similar realities – managing financial strain, workforce disruption and the long-term health impacts of chronic stress while caring for loved ones with Alzheimer’s, dementia linked to traumatic brain injury and other cognitive decline.
Research and caregiver health data shows that a substantial share of family caregivers of people living with dementia experience serious psychological and physical strain: 30% to 40% of family caregivers of people living with dementia experience symptoms of depression, while about 59% report high to very high emotional stress and 38% high to very high physical stress.
Caregiving can even be life-threatening. A study published in the Journal of the American Medical Association found that caregivers experiencing high levels of strain face a significantly increased risk of mortality compared with non-caregivers.
“I feel alone,” is one of the most common refrains among caregivers.
And yet, despite the physical, emotional and financial strain, nearly half of dementia caregivers report that the experience is deeply meaningful. Love and purpose coexist with exhaustion and grief.
Still, love should not require self-sacrifice without support.
For 14 years, the Elizabeth Dole Foundation has worked to elevate caregivers’ voices, advance practical policy solutions and engage employers to better support caregiving employees, particularly those caring for wounded, ill or injured veterans.
Caregivers deserve to be recognized as the heroes they are, but recognition alone is not enough if it is not matched with meaningful support.
Recognition without meaningful action rings hollow
They need action.
They need workplaces where flexibility is a necessity, not a perk. They need health care systems that treat caregivers as essential members of the care team. They need elected officials who understand that supporting caregivers strengthens families, stabilizes the workforce and reduces long-term health care costs.
Caregiving is not a niche concern. It is a defining test of who we are as a nation, shaping our population, our health care system and our economy.
At some point, nearly every one of us will either provide care or need it. How we respond now will determine whether caregivers continue to shoulder this responsibility in isolation or are finally met with the support they deserve.
By 2050, global dementia cases are expected to nearly triple. Without meaningful changes, millions more families will shoulder this responsibility alone. We cannot afford to keep treating caregiving as invisible.
If we are willing to see caregivers clearly – including those navigating Alzheimer’s, FTD and other forms of cognitive decline – and support them deliberately, we can build a future where no one has to battle in the shadows to care for the people they love.
That responsibility belongs to all of us.
Emma Heming Willis is a caregiver, mother, wife and New York Times best-selling author. Steve Schwab is the CEO of the Elizabeth Dole Foundation.