Bridging Gaps in Alzheimer’s Care for Rural and Diverse Communities
The C‑CARERS project at UCSF is reshaping how we understand the experiences of dementia caregivers—especially those in rural and underserved communities. Inspired by her own family’s caregiving journey, researcher Jarmin Yeh is leading an innovative effort that includes surveys, interviews, and photo storytelling to highlight unmet needs and drive meaningful policy change.
A career in aging well
Jarmin Yeh grew up watching her mother care for her grandfather who had dementia. At first, Jarmin’s grandparents were able to live in their New Mexico home, but as time went on and the disease progressed, the couple moved in with Jarmin and her family in Maryland.
Jarmin watched as her mother converted their dining room into a bedroom and the laundry room into a bathroom so her grandparents could live on one floor. “My grandfather was lovely and joyful all the way to the end,” said Jarmin. “He didn’t know who we were. Sometimes he’d teleport to a different time and place, at dinner time he would lead board meetings. We’d go along with it. I think he got the best care we were able to provide him.”
As an adult, Jarmin began her studies in the field of aging and was surprised to see she could build a career around it, specifically around aging well at home. Currently, Jarmin is an Associate Professor for the Institute for Health & Aging at the University of California, San Francisco (UCSF) School of Nursing.
C-CARERS Project
In her latest research endeavor, Jarmin is working on the C-CARERS (Centering Caregivers in Alzheimer’s Research on Equity, Representation, Services and Supports) Project put on by UCSF in collaboration with the Alzheimer’s Association and funded by the California Department of Public Health.
Its aim is to use a community-engaged approach to understand the unique experiences and expectations of caregivers from rural and underserved communities in Northern California.
The project has three layers:
- A survey distributed to the field to learn about people’s experiences
- Interviewing a subset of interested caregivers on the nuances and challenges of their everyday experiences
- A photovoice study where caregivers are given cameras and asked to capture visually parts of their daily life
The goal is to develop advocacy tools that can be used to ask policy makers to share specific resources the community is saying they need. “These are the unmet needs people are identifying,” said Jarmin. “What can we do from a policy perspective to help those people.”
C-CARERS helping rural communities
For a caregiver living in a rural community, access to services like hospitals and in-home care are much harder to obtain. As the jobs that originally brought people into those communities have disappeared, more people are leaving the area than are coming into it. This makes it even harder to get services these small communities need, especially if they rely on public transportation.
“Access to specialists is further away,” said Jarmin. “Some of them have to go outside the county or travel far distances to meet their needs. Better understanding the unique barriers they face could help us develop innovative programing to support them where they are.”
C-CARERS helping underserved populations
California is home to many different ethnic groups such as Hispanic, African American and the Asian American Pacific Islander communities. Because of race and language barriers many of these communities have a hard time gaining access to resources, let alone knowing that there are in-language tools and services available to them.
Additionally, Alzheimer’s disease is stigmatized in many of these communities. This causes misinformation around dementia, leading to fear and uncertainty. For many, fear of being ostracized or profiled keeps people from reaching out for support, even from their primary care doctors.
Jarmin said, “I think if families don’t understand dementia, then they’re trying to figure out things on their own when there are resources out there to help them.”
Understanding caregivers needs
The C-CARERS team is made up of multilingual and multicultural staff. This allows them to provide the survey in English, Spanish, Chinese and Korean. This project is reaching out to people living anywhere in Northern California, which they describe as anywhere north of Fresno.
They’re also utilizing the expertise of the Alzheimer’s Association® in order to find candidates to fill out the survey. “The Alzheimer’s Association is part of our stakeholder taskforce and cochair [of the project],” said Jarmin. “Their input is important in what we do, both as subject matter experts and as people closest to the community doing outreach and engagement.”
Currently, the team is over halfway through their project and has just begun handing out disposable cameras to families who are interested in documenting their caregiving journey. “Pictures can communicate a lot,” said Jarmin. “A sense of their life from their standpoint. It puts us in their shoes.”
Jarmin continues, “There is a huge unmet need, understanding the experience of rural California and making sure they’re understood. [Rural caregivers face] different factors than caregivers in urban areas, [such as] resource access, services, geographic proximity to things they need. We’re trying to better understand that experience.”
For more information on the C-CARERS project visit their website or contact them at C-CARERS@ucsf.edu.
You can find more information on Hispanic, African American and Asian American Pacific Islander Communities as well as additional resources at alz.org.
