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Q&A with Heather Young: Statewide System Works to Improve Lives of Caregivers

February 8, 2021

California’s 11 non-profit Caregiver Resource Centers (CRC) provide a critical layer of support and services to family caregivers across the state. Every year, the centers assist more than 14,000 families and caregivers of adults affected by chronic and debilitating health conditions such as dementia, Alzheimer’s disease, Parkinson’s, multiple sclerosis and many more.

In 2019, the California Department of Health Care Services awarded the CRCs $30 million to expand and improve family caregiver services over three years, with a focus on technology platforms to drive improvements. Central to the expansion project is the statewide deployment of CareNav — a secure, interactive caregiver client record — as well as other communication platforms for online service delivery. CareNav allows caregivers to create a personalized caregiving dashboard filled with resources tailored to their unique needs, communicate securely with CRC staff and track authorized CRC services.

One year into this three-year expansion project, we checked in with Heather M. Young, PhD, RN, FAAN, Co-Principal Investigator of the project evaluation report with co-principal investigators Janice Bell, MN, MPH, PhD, FAAN and Jennifer Mongoven, MPH. A caregiving researcher for 30 years, Heather shared with us her findings about the project and its implications for caregiver support and services in the future.

1: You have completed the first-year evaluation of a three-year project to modernize and expand the CRC system – how big is this project and what does it do?

This project is ambitious and incredibly exciting. CareNav has existed and been deployed at the independent CRC site level over a number of years, but this expansion – taking it to a state level – is groundbreaking. Deployment across the state has meant refining and improving the CareNav system so that it robustly serves each of these 11 (very different) CRC sites’ communities, but also works as a coordinated, statewide platform that supports an ever-growing number of caregivers. The expansion has been ambitious in terms of both modernizing the technology and training a huge number of staff and participants.

As for what the project does, it really boils down to two things: services and data. In CareNav, the CRCs have a technology that helps them provide caregivers with better, more targeted services. And because the data (which may be entered by the caregivers themselves) is real-time and robust, the CRCs get a clear picture of what caregivers actually need. It helps them design initiatives and outreach that meet real, demonstrated needs in their community. Furthermore, because it’s statewide, the data informs policy making and state-level decision making around how best to support caregivers in the state. It’s the first time that we’re seeing real-time, strong data at the state level, longitudinally over time.

2. What would you say are the top three findings from the first year?

First, that this was a phenomenally successful implementation. The process of deploying the technical component was one aspect, but the process of effectively training all the staff across these different sites was a huge undertaking.

The second thing I’ll mention is the pandemic. COVID-19 not only meant that the implementation had to go remote virtually overnight, but caregiver needs increased sharply as a result of the pandemic – and the CRCs worked diligently to meet those increased needs, all while training staff and rolling out an enhanced technology platform.

Third, I’d highlight an interesting data point. Looking at the data gathered in CareNav, we see that caregivers are young – in fact, more than 50% are under 65. The “sandwich generation” persists and is in fact growing. This is true across all racial and ethnic groups. Half of caregivers are working full-time while caregiving, 30 percent are caregiving full-time, and 40 percent are doing medical nursing tasks such as managing medication, diets and durable medical equipment. These caregivers are navigating complex situations.

3. From your vantage point as a long-term researcher in the field of caregiving, how do you think this project will meet the needs of family caregivers?

Well, the picture of a “typical caregiver” is evolving. We know caregivers have diverse needs, situations, circumstances and preferences when it comes to support. Providing them with an online platform that collects data in real time – about their actual needs – will help CRCs tailor services and support to what’s actually needed. They can track which services are proving successful, and also identify gaps. It will tell providers what’s most helpful to caregivers and allow them to monitor it over time and across a statewide population.

And from the caregivers’ perspective – CareNav is just extremely convenient in addition to being resource-rich. They can log in at any time of day or night and get an assessment, as well as information or resources they need, right away. That’s significant progress in terms of meeting them where they are and making telehealth more accessible.

4. How do you envision the data being used? What will it add to the field overall?

For CRCs, they’ll be able to look to the data to see if what they’re doing is effective and meeting needs. It’s a fantastic quality control and program-building tool.

At the state level, the data in CareNav will be invaluable in helping policymakers understand what the needs are and where investments are best focused. It’s also invaluable for predicting risk. For instance, if the data tells us that, over time, when X and Y happen in a caregiving situation, then Z is very likely to occur. Well, then interventions can be made that mitigate that risk before negative outcomes come to pass.

The longitudinal data will also help the CRCs with data- and resource-sharing across the state, ensuring that caregivers do not fall through the cracks. It’s important to remember that data is just a tool – it simply helps illuminate the questions we need to be asking about how to better serve caregivers. Because in the end, health care and social services support is about people and communities.

5. What’s next for this project?

This first year focused on implementation and creating a robust statewide system. Now that the structure is mostly set, the next phase centers on the data. That includes the CRCs working to ensure accuracy and in reviewing data in real time to make sure caregivers are being supported in the right way. Going forward, this strong technological foundation will also enable an expanded number of caregivers served and services engaged. In short, more tailored services will be provided faster – and to a broader community.

The project teams will continue reviewing the data for longitudinal uses, risk analyses and so on. For instance, we are creating a dashboard for CRC Directors, so they can make improvements in response to what the data tells them.

6. Any closing thoughts?

Having done caregiving research for decades, I’d like to underscore how ambitious and revolutionary this project is. California’s decision to make this kind of investment speaks to the fact that caregiving is a significant and important part of our larger health care and community health landscape – and that supporting caregivers is a priority. The role of caregiving in our communities will only become larger and more important with time, so it’s great to see it being advanced here and now. I believe this project can become a model in our country to meet health care demands of the future.

Finally, I’d like to share my admiration for the groups involved here – the 11 CRCs and the leaders who envisioned and executed this initiative – for their commitment to this project and to caregivers across the state. Their dedicated work over recent decades has shaped this project and positioned it for success, which means making tangible improvements in the lives of caregivers and their care recipients.

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Read a summary of the report, Evaluation of Service Delivery and System Change by the California Caregiver Resource Centers, here.

Heather M. Young is a nurse leader, educator, scientist and nationally recognized expert in gerontological nursing and rural health care. She serves as national director for the Betty Irene Moore Fellowship Program for Nurse Leaders and Innovators and is a professor and dean emerita for the Betty More School of Nursing at UC Davis. She co-leads the Healthy Aging in a Digital World initiative at UC Davis Health and co-directs strategic partnerships with the school’s Family Caregiving Institute, which serves family caregivers and the health professionals that support them. See her full bio here