In the United States, the Alzheimer’s Association estimates that 11 million family members and friends are involved in the unpaid care of people with dementia. Many of them are of a similar age to or even older than the person they are caring for. Some are caring across generations that do not speak the same first language. Many have no idea that there is any outside support available.
Dementia isolates. As the condition progresses, increasing difficulties with communication and connection can create a social void in which stigma also plays a part. Although in 2024 almost half of Americans have a family member or friend living with dementia, the condition remains feared and misunderstood.
“We still need to educate the public,” says Jung-Ah Lee, professor and associate dean for diversity, equity, inclusion and belonging at the Sue & Bill Gross School of Nursing. “From the elementary school to the senior center, everyone needs to understand: that could be my future. How can I be part of an age-friendly society?”
The primary carers of people with dementia—usually spouses or children—also risk isolation, more acutely so when language or cultural differences render them invisible to services and systems that could support them.
How are these caregivers coping? How could their lives, and their ability to care, be made better? And—as always in healthcare systems—how can effort and expenditure be prioritized to provide the greatest impact possible?
These are questions Lee set out to investigate in 2019 with a pilot intervention to help the family caregivers of Korean-, Vietnamese-, Spanish- and English-speaking people with dementia.
“Many lay people ask, ‘Why are you supporting the family, not the patient?’” says Lee. “But this is where the person with dementia lives—a Korean home, a Latino home. The family is where that person’s support is going to come from. These families are in silos. There is little culturally appropriate social support unless they have been paying out of pocket for in-home service or long-term care facilities. They are a very, very underserved population. There is no cure for dementia, so if people with dementia are to have quality of life, family is everything.”
Cultural understanding is crucial to recognizing the difficulties specific caregivers face, Lee explains. In Vietnamese- and Korean-speaking families, for example, awareness of Alzheimer’s and other causes of dementia may be particularly low because the family doctor can be reluctant even to name the condition. To avoid voicing the diagnosis outright, primary care providers might refer to medication as “brain vitamins” or “brain supplements to make your parents or spouse smarter.” Lee found caregivers who did not know what they were dealing with.
Lee’s project involved training bilingual research staff as community support workers who met with caregivers regularly, one-on-one, over a three-month period. They investigated caregivers’ concerns and the challenges they faced, also imparting information about the symptoms and progress of dementia. The community workers trained caregivers in self-soothing and self-calming techniques and facilitated their knowledge and connections with available sources of external support. Critically, self-care was enhanced using wearable technology—a smartring and a smartphone app—to measure markers of wellbeing and inform both the caregiver and the study when selfcare measures needed to be taken.
“Asians and Latino family caregivers who are struggling still want to express their emotions positively,” says Lee. “They don’t want to seem like they are complaining. For example, when asked they would say, ‘I slept okay,’ but the data told a different story.”
The reported impact of the intervention on caregivers was emphatic. Participants were found to benefit in all three areas under scrutiny: individual empowerment (including capacity for self-care), relationships with the people they cared for, and creating community connections. Importantly, the information provided by wearable tech enabled the researchers to personalize care at far lower cost than would be possible through any other existing method, holding the promise of a scaled-up support service that could be both effective and affordable.
Nursing combined a paying job straight out of college with Lee’s dream of making healthcare systems better for all.
In pursuit of that goal, Lee is now involved in a five-year NIH/NIAfunded intervention developed from the combined lessons of her threemonth pilot study and a subsequent telephone support intervention that she ran during the Covid pandemic. She continues to work on refining the usability of wearable tech, with Amir Rahmani, Professor of Nursing and Computer Science at UC Irvine, as a collaborator. Additionally, Lee has worked with UCI Health Geriatrics on other state-funded projects aimed at improving early detection of cognitive decline among low-income older adults, and is developing a virtual interactive education program for informal caregivers of persons with dementia.
All this, Lee explains, is the organic development of a nursing career that has zeroed in inexorably on questions of health equity and access.
“My heart is for health equity,” she says. “That’s my center.”
Lee traces that center to her origins in South Korea. When she was a newborn baby and her sister not much older, their father died right after open-heart surgery, at the age of just 28. “There was very little skill in open-heart surgery in Korea in 1971,” she says.
“The family home and income disappeared with my father. We went to live with my grandmother and my sister was my ‘little mother,’ a second mother to me. My mom worked so hard. She came home only to sleep.”
Lee identified nursing as a good choice of career because it combined her requirement for a paying job straight out of college with her dream of making healthcare systems better for all. She worked as a registered nurse in an academic medical center in Seoul, Korea, developing an interest in care quality improvement, before attending graduate school at the University of Washington, Seattle, and subsequently obtaining her PhD there. In 2008, she joined the University of California, Irvine, as a founding faculty member of the Program in Nursing Science that became, in 2017, the Sue & Bill Gross School of Nursing.
By now, Lee’s work had familiarized her with the difficult gap between identifying improvements to large systems and implementing them. “I was—and am—a faculty member working outside the healthcare system,” she points out. “It’s hard to change organizations, particularly from the outside.” It occurred to her that care-related systems outside the hospital might prove more flexible.
A chance encounter on an airport shuttle bus inspired Lee’s first insight into a new way to bring care to the community. Returning from a flight, she was intrigued to see two fellow travelers, apparently in their eighties, happily using an iPad—a recent invention at the time. It struck her that she was witnessing a revolution: the intuitive touchscreen with its visible array of app icons overcame many of the previously existing barriers between older users and tech.
Lee and her team of bilingual researchers and students, who trained as community support workers for her current five-year project.
Her first instinct was to develop an app, which she did: a successful medication education app for seniors, encouraging at-home adherence to oral anti-coagulation therapy for people at risk for thrombosis. “But,” says Lee, “tech overtakes your progress when you’re developing an app.” She felt there had to be an even smarter use for smart tech in community nursing care.
Lee was at the time helping a medical colleague as a Korean-language interviewer for a geriatric study. Her role involved asking 10 senior Korean participants a series of questions developed by healthcare providers. “I was raised by my grandmother so talking to seniors is easy for me,” says Lee. “I talked to them about their perceptions of healthy aging and community support, about elderly depression, end of life, cancer, whether they had experienced racial discrimination in the healthcare system. They were very, very frightened of dementia, of memory loss.
“It opened my eyes,” she continues. “What is it to be an immigrant? I had lived in the U.S. for 15 years, but as a Korean, a foreigner. I got my green card, I got tenured in 2015. Talking to these seniors I realized, oh, I am a Korean-American now. How come I don’t know the life of immigrant seniors?”
Lee what she calls, “my ‘aha’ moment about working with seniors in the community.” Clearly, there were populations all around her in the U.S. whose fears and difficulties about aging were unknown and unnoticed. At the same time, Rahmani’s work on wearable tech was revolutionizing the potential of nursing research at UC Irvine, and Lee was quick to join forces. “I have always been comfortable with technology,” she says.
There are populations all around
the U.S. whose fears and difficulties
about aging are unknown and
unnoticed.”
It was from this confluence of influences that Lee’s initial intervention was designed, and from which her work has grown. Her current five-year study ends in 2025 and she is still actively recruiting participants from four different ethnic communities. “I’m very busy!” she says.
Nonetheless, she continues to expand her interest to encompass related lines of research.
“There’s another part to this,” she says. “How can we help prevent cognitive decline? Nurses can help people manage chronic diseases very well. We can help them exercise, eat healthy—I may skip a meal but I never skip exercise. We need to manage social isolation, stress, loneliness and senior depression— all associated with decreasing cognitive functions. The concept is a little bit different to healthy aging. It’s a holistic perspective. And social connection is a big part of it.
