In This Story
For 12 years, Lily Liu cared for her mother with Parkinson's disease in her D.C. apartment, weathering the pandemic and its isolation along the way. She handled every meal, every bath, and every sleepless night as her mother’s Parkinson's-related dementia advanced. “I was doing it all by myself,” she said.
A welcome intervention came when she signed up for Mason CARES, an evidence-based support program designed by George Mason researchers to help family caregivers like Liu manage stress and burnout. The nine-week virtual program offered coping strategies like guided breathing, journaling, and group discussion.
The group setting itself is most significant, said social work professor Megumi Inoue, who served as a co-investigator of the project. “They learn they’re not alone. There are people wearing the same shoes, so they can exchange information and experiences.”
The gerontologists wanted to know whether this support structure could deliver measurable reductions of caregiver stress. The answer was, without question, yes. Using a standardized caregiver burden score measuring exhaustion and emotional strain, they saw a 15% drop in stress levels among participants.
“That’s a pretty big deal,” said Gilbert Gimm, associate professor of health administration and policy, who led the data analysis. “Even modest reductions mean relief.”
Launched during COVID-19 and delivered over Zoom, the Mason CARES (“Caregivers Aiming for Resilience, Empowerment, and Support”) program evolved through several iterations into 2023 and ultimately reached 97 caregivers across the country, an unusually large sample for dementia research. Social work professor Catherine Tompkins, the principal investigator, said the pandemic forced the team—which includes social work professor and chair Emily Ihara—to rethink old models. Historically, she said, it’s difficult to get caregivers to leave their loved one to attend anything in-person. With the necessary shift online, participation got easier. “We ended up with people from all over—Texas, Louisiana, northern Virginia,” she said.
In Liu’s support group, some decided the connection was valuable enough to continue after the program ended. “Five of us kept it going. Three years later, we’re still meeting,” said Liu, whose mother passed away two years ago. “We’ve seen each other through loss and grief. This program built a sense of community and that meant a lot for our little group.”
A public health priority
Across the United States, nearly 12 million people provide unpaid care for relatives or friends living with Alzheimer’s disease or other dementias. About 80 percent of that care takes place at home—a burden only expected to increase as 110 million people worldwide are expected to live with dementia by 2040.
At the George Mason College of Public Health, researchers are treating that picture as a public health priority. Across the college, faculty are creating and researching interventions for the pressures caregivers face in daily life, from peer networks to memory-based therapies, AI tools, and lessons drawn from international practice.
The unsustainable weight of caregiving
The toll on caregivers is unquestionable. In the Mason CARES study, participants entered with burden scores far above the cutoff for “high stress,” a level associated with anxiety, depressive symptoms, and worsening physical health. Nearly three-quarters also reported at least one chronic condition of their own, as Inoue found in a separate analysis of Alzheimer’s caregivers.
“Caregiving is one of the most stressful roles imaginable,” Tompkins said.
Gimm, who teaches a government payments course, sees a policy blind spot in how the U.S. has de-emphasized institutional support for dementia care. When older Americans “age in place” at home, they eventually need to rely on loved ones, whose unpaid labor is worth an estimated $413 billion annually. “The U.S. saves money by keeping more people at home,” he said, “but it’s on the backs of family caregivers. That’s not sustainable.”
Tompkins agreed that for “aging in place” to work, caregiver support can’t be treated as an afterthought. Family caregivers urgently need access to training, resources, programs, and respite, she said.
How global insights, emerging tech transform caregiving
Both Inoue and assistant social work professor Li-Mei Chen bring a global perspective to their work, shaped by years studying aging and dementia care in Japan, where nearly one in three citizens is over 65.
“In Japan, dementia is seen as a community issue, not just a family one,” said Chen, who points to strategies like neighborhood cafés for people living with dementia, school-based training on recognizing and caring for dementia, and volunteers wearing orange wristbands to signal they’ve been trained.
Both researchers believe elements of Japan’s model—especially its focus on preventive education—could translate successfully to the U.S., helping more people understand dementia before families reach a point of crisis.
They’ve also folded Japanese innovation directly into their research. Using virtual-reality technology first developed in Japan to simulate the sensory and emotional disorientation of dementia, the team is testing how immersive training can deepen understanding of the condition for caregivers in nursing homes. Early findings suggest the experience not only boosts empathy but also softens some of the fears and misconceptions surrounding dementia and aging. One day, they hope the technology could be adapted for family caregivers.
Another George Mason researcher, health administration and policy professor Alicia Hong, is making use of artificial intelligence in her work. With NIH backing, Hong created an AI program called WECARE that delivers coaching and resources to Chinese-American caregivers. The goal, Hong says, is to make the technology “feel more like a companion than a device,” one that responds nimbly to caregivers’ realities.
AI is also driving new approaches for reminiscence therapy, helping caregivers rekindle memories with their loved one and reconnect. Nursing Professor Kyeung Oh is refining an AI-powered storytelling tool called LifeBio that helps families capture the life stories of older adults at risk of developing dementia. “When people talk about their lives,” Oh said, “it reminds them who they are and helps families see the person, not just the disease.”
The technology arrived first in nursing homes, but with a new NIH grant Oh is now adapting the tool for family caregivers at home, across a variety of cultural backgrounds.
Turning research into relief
With Mason CARES, some iterations have also integrated music intervention, adapting a national program called Music & Memory. Research has long shown that familiar music can stir something deep in people living with dementia, helping them speak, smile, or move in ways that seemed lost.
George Mason researchers are now looking into how those results can impact caregivers. “The idea is that if the person living with dementia is happy, it can reduce resistance, and caregiving becomes more positive,” Inoue said.
Some caregivers in the program, researchers found, never got around to using their provided MP3 players at all—too busy, or too intimidated by the technology. Others, though, found the shared music time meaningful. One caregiver told the team that a song from her wedding helped reawaken a sense of partnership with her husband, whose dementia had left him disconnected.
In a follow-up study, Inoue and Tompkins are now examining those types of nuances to understand what made the program effective, and where it fell short.
For Lily Liu—whose experience with her mother led her to work as a family caregiver advocate—one of the unexpected benefits of Mason CARES was the chance to take part in the research. “It’s wonderful that we could contribute to something scientific and scholarly,” she said. “To see them take what they learned from us and build on it really means something.”