More than 6 million caregivers in California know the challenges that come with caring for a family member or friend over the age of 18. Research from the Family Caregiving Institute at the Betty Irene Moore School of Nursing at UC Davis sheds new light on those providing care.

In the fourth year of the “Picking Up the Pace of Change: Scaling Services for a Changing Caregiver Profile” project, funded by the California Department of Health Care Services and the California Department of Aging, evaluators examined data for more than 5,000 clients of the California Caregiver Resource Centers (CCRCs). Eleven community-based nonprofits, like the Sacramento region’s Del Oro Caregiver Resource Center, make up the statewide network.

“We explored beyond the typical sociodemographic factors such as age, gender, sexual orientation and financial resources. When examining a caregiver’s cultural background, race, ethnicity, religious affiliation and rurality, we discovered they carry different expectations for caregiving in the family and how they work with each other,” said co-principal investigator Heather M. Young, Ph.D., R.N., F.A.A.N., School of Nursing professor and dean emerita. “All of these aspects of diversity really mean that there’s no one-size-fits-all strategy to support caregivers.”

Compared to caregivers in other surveys, CCRC caregivers tended to be older (about 40% were over 65) and more diverse. Slightly fewer than half reported their race and ethnicity as other than white and non-Hispanic.

Among the clients surveyed, most are females 45–84 years old with partners, provide care for someone with Alzheimer’s disease or dementia, spend more than 40 hours per week providing care, and receive no paid help.

“We determined that as caregivers get older, the intensity of the care they provide increases. Furthermore, the highest intensity of care was among those who identified in racial and ethnic groups other than white and non-Hispanic and those with income below the federal poverty level,” noted co-principal investigator Janice F. Bell, Ph.D., M.P.H., M.N., F.A.A.N, associate dean for research and Western Health Advantage Endowed Professor. “Surveys with random samples do not fully capture the experiences of caregivers like those served by the CCRCs who are engaged in intense and complex care.”

To expand and improve services, CCRCs deployed a CareNav portal that allows clients to securely share messages with a care consultant, who provides tailored education and resources to meet specific needs. The system collects valuable data on individuals using CCRC services.

In 2023, the CCRCs served more than 900,000 caregivers and engaged 28,000 participants in educational offerings.

More than 19,000 clients have participated in surveys and while their burden is immense, there are bright spots. When caregivers use CCRC services, their strain, loneliness and symptoms of depression improve. Public outreach has also increased, and educational programs offered by CRC nearly doubled.

Based on the data gleaned from this report, The California Department of Aging has asked the UC Davis team to develop a statewide equity plan for caregivers and to identify gaps in services and support for caregivers along several dimensions of diversity.