Study finds comprehensive dementia care improves caregiver confidence, but not behavioral symptoms

The Dementia Care Study (D-CARE) has found that health system and community-based dementia programs are no better than routine care in reducing caregiver strain or managing patient behaviors, but do improve caregivers’ confidence in their ability to manage challenges and access support. 

D-CARE represents the largest nationwide pragmatic clinical trial comparing different approaches to dementia care for people with Alzheimer’s disease and other dementias to date. Researchers randomly assigned 2,176 people with dementia and their caregivers to health care system-based care delivered by Dementia Care Specialists, a community-based organization-based care delivered by Care Consultants, or usual care.

“Although several approaches have been developed to provide comprehensive care for persons living with dementia and their caregivers, the relative effectiveness of the different approaches are unknown,” said Thomas Gill, MD, Professor of Medicine (Geriatrics), of Epidemiology, and of Investigative Medicine at Yale School of Medicine and co-investigator of the study.

Researchers found no significant differences in patient behavioral symptoms or caregiver strain between health care system-based care, community-based care, and usual care over the 18 month trial period. However, caregiver self-efficacy – a measure of caregivers’ confidence in their own ability to navigate dementia-related challenges – was improved in both the health system-based and community-based paradigms. Researchers say higher self-efficacy was observed within 6 months of care delivery and remained consistent across the trial period.

“Greater self-efficacy of dementia caregivers may have considerable benefits, including better ability to care for a person with dementia in their homes, improved caregiver quality of life, less caregiver depression, and more positive feelings about caregiving,” Gill said.

The multi-site study was funded by the Patient-Centered Outcomes Research Institute and the National Institute on Aging and led by researchers at UCLA, with the Yale Center of Analytic Sciences and Yale Program on Aging serving as the Data Coordinating Center. Researchers say their results indicate specialized programs may not be superior to routine care in certain outcomes, but do support caregivers more effectively.

On July 1, 2024, CMS launched the Guiding an Improved Dementia Experience (GUIDE) Model that aims to support people with dementia and their unpaid caregivers. “The model, which will run for eight years, will benefit from the evidence generated by D-CARE,” Gill added.

Research reported in this release was supported by the Patient-Centered Outcomes Research Institute under award number PCS-2017C1-6534, from the National Institute on Aging under award number R01AG061078, from the Yale Claude D. Pepper Older Americans Independence Center under award number P30AG021342, and from the National Center for Advancing Translational Sciences under award number UL1TR000142 with 0% nongovernmental funding. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.