The University of Minnesota School of Public Health (SPH) has been approved for funding by the Patient-Centered Outcomes Research Institute (PCORI) to study two online dementia caregiver support programs that help families manage symptoms associated with dementia and improve caregiver well-being.

Led by Distinguished McKnight University Professor and Robert L. Kane Endowed Chair in Long-Term Care and Aging Joseph Gaugler, the project aims to determine the effectiveness of two web-based dementia caregiver support interventions in helping caregivers respond to behavioral and psychological symptoms in people living with dementia while also improving caregiver quality of life and well-being. The five-year, $12.4 million study will be conducted in partnership with USAging, the national association representing and supporting the network of Area Agencies on Aging and Title VI Native American Aging Programs across the United States.

“Caregivers of people living with dementia often face difficult behavioral changes, including agitation, anxiety, sleep disruption, and confusion,” Gaugler said. “While community organizations frequently provide educational materials and support resources, these efforts can be time-intensive, constrained by staff capacity, and not always tailored to caregivers’ specific needs. This study will evaluate whether scalable, web-based support programs can better help caregivers manage these challenges in real-world settings.”

“USAging and its members have a long history of supporting older adults living with dementia and their caregivers,” said USAging CEO Sandy Markwood. “We view this study as critical to the health and well-being of the 6 million Americans with dementia and their loved ones who are navigating the intricacies of their dementia journey, which can be overwhelming, confusing and isolating. We are grateful to PCORI for making this study possible. The findings will be invaluable to the Aging Network as we continually seek to better support this population.”

Researchers will conduct a randomized controlled trial comparing the two online dementia caregiver support programs that provide education, care-planning tools, and practical guidance. Findings could help caregivers, clinicians, community organizations, and policymakers better understand which types of support programs most effectively improve outcomes for both caregivers and people living with dementia.

“This research project was selected for PCORI funding not only for its scientific merit and commitment to engaging patients and other health care stakeholders, but also for its conduct in real-world settings,” said Nakela L. Cook, executive director of PCORI. “It has the potential to answer an important question about dementia caregiver support and fill a crucial evidence gap to help patients and those who care for them make better- informed health care decisions that reflect their needs and preferences. We look forward to following the study’s progress.”

The funding award to the University of Minnesota has been approved pending completion of PCORI’s business and programmatic review and issuance of a formal award contract.

PCORI is a nonprofit organization with a mission to fund patient-centered comparative clinical effectiveness research designed to provide patients, caregivers and clinicians with evidence-based information needed to make better-informed health care decisions.

About USAging
USAging is the national association representing and supporting the network of Area Agencies on Aging and advocating for the Title VI Native American Aging Programs. Our members help older adults, people with disabilities and family caregivers throughout the United States live with optimal health, well-being, independence and dignity in their homes and communities. For more information, visit usaging.org and follow @theUSAging on Facebook, X and Instagram.