Each year in Arizona, family members spend about 357 million unpaid hours caring for family members with Alzheimer’s disease and related dementias (ADRD). Before now, each caregiver in rural northern Arizona had to scramble and search for relevant resources for their loved one, often overlooking their own support and care.
Despite the pandemic disruption, researchers from the Southwest Health Equity Research Collaborative created a targeted, northern Arizona ADRD caregiver resource guide. Their 44-page guide, available on their NAU ADRD caregivers project website, describes the unique challenges of caregivers in these rural areas and lists the available ADRD services and social support resources. It also lists the services’ exact locations that the researchers pinpointed through GIS mapping.
Researchers include the principal investigator, Regents’ Professor Julie Baldwin, director of the Center of Health Equity Research (CHER); co-investigators Dorothy Dunn, associate professor and chair of the community nursing department at the University of Massachusetts Dartmouth; Y. Evie Garcia, associate professor for the NAU Department of Educational Psychology; Michael McCarthy, associate professor for the Department of Social Work; Heather Williamson, assistant professor for CHER and the NAU Occupational Therapy department; Rachel Bacon, postdoctoral fellow at the Center for Mind and Culture; and Mark Remiker, CHER senior research coordinator.
Origins of the resource guide
To create the highly specialized guide, Northern Arizona University researchers first conducted a one-year study where they recruited family caregivers of individuals with ADRD to participate in phone focus groups and online or mailed surveys.
Titled “A Multilevel Examination of Health Equity among Ethnic and Rural ADRD Caregivers,” the study combined findings from focus groups and surveys of caregivers with interviews of policymakers and providers, and locations of caregiver resources in the region.
“The purpose of the study was to use surveys, individual and focus group interviews, and GIS mapping techniques to get a clear and comprehensive picture of both the needs and assets of ADRD caregivers in northern Arizona,” McCarthy said.
Once COVID-19 began, the researchers shifted their focus to identify how health and caregiver support resources changed during COVID-19 and how family caregivers are coping with current COVID-19 related caregiving demands.
In the guide, excerpts from the surveys, focus groups and interviews help illustrate the experiences that caregivers have had with these resources. It also highlights key information and provides recommendations about resources needed to best support caregivers in northern Arizona.
“We were especially interested in the health of caregivers, and the resources they use and need to maintain their physical, emotional, and mental well-being,” Baldwin said. “We also want programs that provide support to caregivers to recognize the unique needs and assets of diverse populations in northern Arizona. We hope that results from this project can be used to inform culturally-based programs for Hispanic/Latino, Native American, and rural caregivers.”
The guide’s first section provides an overview of ADRD and caregiving in northern Arizona. It describes how the population and different services and resources are geographically distributed, as well as the challenges that caregivers face. The report section ends with a summary and policy recommendations for improving access to important services and resources.
The second section includes contact information for different types of resources that support family caregivers, such as support groups, home health services, senior and community centers, assisted living facilities and hospice services.
“We hope this guide is useful for caregivers in northern Arizona trying to find available resources in their community,” Williamson said. “This report can also be used by advocacy groups to promote the expansion of resources for family caregivers throughout the region.”
For more information, read the guide, “A Mapped Resource Guide for Alzheimer’s Disease and Dementia Caregivers and Community Members Living in Northern Arizona.”
The project is funded by the National Institute on Minority Health and Health Disparities of the National Institutes of Health, (U54MD012388).