No one truly understands the weight of caregiving until it’s on their shoulders. Filled with middle-of-the-night worry, hard choices about time and money, and the quiet ache of watching someone you love change, it’s clear why nearly half of family caregivers in the U.S. reported anxiety, depression, or other mental health challenges in the last year.
A recent study from the Columbia University Mailman School of Public Health, sponsored by Otsuka, underscores the strain. Among its findings: 24 U.S. states are on the brink of a caregiving crisis; dementia care alone accounts for nearly 40 percent of unpaid support; and states which have a greater percentage of their population living in rural areas face the steepest staffing shortages, leaving family members to fill the gaps. In short, millions of Americans are quietly propping up a system that can’t function without them.
“Caregivers are doing the equivalent of a second full-time job while navigating complex systems,” says John McHugh, PhD, a Columbia health-policy researcher and lead investigator on the report. “We have to meet their mental health needs with the same urgency and compassion as their loved ones’ physical needs.”
Behind the statistics are real people juggling households, careers, and relationships while caring for someone who can no longer fully care for themselves. We spoke with three of them about the realities of caregiving—and the resources that keep them going.
“There’s real grief in losing parts of yourself.”
Patti LaFleur began caring for her mom, who had early-onset dementia, more than 15 years ago. When her father fell ill, she stepped into full-time care, and the resulting stress was life changing. “My sleep, my marriage, even my appetite were affected,” LaFleur says. “Eventually, I had to step away from my job as a teacher, a career that gave me purpose. It felt like losing a piece of my identity. I also saw myself as a good friend, but caregiving made me feel like I lost that, too. There’s real grief in losing parts of yourself.”
Courtesy of Subject
Patti LaFleur with her mother, whom she’s cared for through dementia.
One of the most overlooked aspects of caregiving, she says, is isolation—a “completely alone” feeling in both an emotional and logistical sense. “My mom couldn’t be left on her own for more than 15 minutes,” LaFleur says. “Respite care was too expensive, so I missed out on things I loved, like spending time with friends or even something as simple as walking around the mall.”
As her mom’s dementia progressed, LaFleur experienced what’s called anticipatory grief: “grieving my mom while she was still alive,” she says. When burnout hit, Patti got connected with a virtual organization called Lorenzo’s House that supports younger families like hers and it became her lifeline. “Logging into that video call was a gift,” LaFleur says. “Being in a virtual room with people who truly understood was everything. My advice for others is to find your community, even just two or three people you can lean on: a friend, a family member, or a mental health professional.”
“Caregiving has changed me.”
At 35, Jackie Shapiro is caring for her mom, who lives with frontotemporal dementia (FTD), while also raising her young son. “My mental health isn’t in a great place right now, and I know I’m not alone in that,” she says. “Most caregivers I know are just trying to get through each day. I don’t know a single person in this boat who’s saying they’re living their best life right now.”
Courtesy of Subject
Jackie Shapiro with her son, balancing caregiving and motherhood.
Shapiro doesn’t sugarcoat her daily realities or the steady anxiety that leaves her on edge. “If someone had told me early on that I’d have to help with basic human needs like feeding, bathing, and dressing, it would have prepared me better than just hearing about neurocognitive decline,” she says. “I live in a constant state of alert,” she says. “If my dad calls instead of texts, I assume it’s an emergency. That’s my baseline now—always bracing for the worst.”
To cope, Shapiro leans on therapy, exercise, and a routine that keeps her tethered. “I take my dog out every morning and then hit the gym,” she says. “I needed someone to talk to—someone who wasn’t my husband or my dog—so I got a therapist who’s teaching me about finding balance and making time for myself.”
“Caregiving has changed me,” she reflects. “I’ve lost parts of myself, but I’ve also gained resilience, adaptability, and a deeper emotional awareness. This is a dark chapter of my life. I know I’ll look back and say, ‘That was horrible.’ But these are the cards I was dealt. I’m in survival mode.”
“Grief is a constant part of caregiving.”
In Atlanta, 41-year-old Aisha Adkins has spent more than a decade caregiving—first for her mom, who had FTD, and now for her father, who has vascular dementia. “Caregiving has impacted my mental health,” she says. “I have a lot of anxiety about the future and a lot of depression about the present and the past. I’ve experienced night terrors and many of the classic symptoms of PTSD.”
Courtesy of Subject
Aisha Adkins with her dad, now in her care with dementia.
The hardest moments were when her mother didn’t recognize her. “We were strangers to her, and she was afraid of us,” Adkins says. “No matter how often it happened, it was always devastating. I never got used to it. You slowly lose the person you knew—their personality, their traits—and eventually, you lose them entirely. Grief is a constant part of caregiving.”
When she couldn’t find therapists who understood her experience as a young Black woman, Adkins sought culturally competent care. “There’s something powerful and unspoken about shared identity. It feels like coming home,” she says.
Adkins now leads a nonprofit connecting BIPOC caregivers to mental-health resources. “Helping others brings resilience and hope,” she says. “It reminds me I’m not alone—and that this work matters.”
“It’s time we started talking about caregiver mental health.”
The Columbia report, America’s Unseen Workforce: The State of Family Caregiving, sponsored by Otsuka, put hard data behind the above stories, highlighting a growing sense of urgency. “We need to start seeing care for our aging loved ones as a critical component of the country’s well-being,” McHugh says. “It’s just as important as any other aspect of healthcare.”
When systems fall short, caregivers spend more time navigating red tape and less time sleeping, exercising, or connecting—exactly the activities that enable them to protect their mental health. “We’re seeing repeatedly that it is the family caregiver who shoulder the immense pressures of healthcare shortages,” McHugh says, as the above stories illustrate.
Otsuka has made a corporate commitment to stand with caregivers the way they stand with their loved ones by funding research that shines a light on the crisis and offering valuable tools and resources for ongoing support. The Columbia report findings underscore the need to advocate for more support, including better training, wages, and practical assistance that make daily life more livable.
“It’s time we started talking about caregiver mental health,” says LaFleur. “It’s a very real challenge.”
Individuals featured in this story are paid collaborators of Otsuka America Pharmaceutical, Inc.
November 2025 01US25EUC0440
