Key takeaways

  • There were no significant differences in patient behavioral symptoms or caregiver strain between the three types of care approaches that were studied.
  • Caregiver self-efficacy — a measurement of caregivers’ confidence in managing dementia-related challenges and accessing support — improved in both the health system and community-based care approaches.
  • The study involved 2,176 persons with dementia and their caregivers and was conducted from June 2019 to August 2023.

New research comparing different approaches to dementia care for people with Alzheimer’s disease and other dementias found no significant differences in patient behavioral symptoms or caregiver strain, whether delivered through a health system, provided by a community-based organization, or usual care (no additional study treatments) over an 18-month period.

However, the Dementia Care Study, also known as D-CARE, also found that caregiver self-efficacy — a measurement of caregivers’ confidence in managing dementia-related challenges and accessing support — improved in both the health-system and community-based care approaches and was rated higher than in those receiving usual care. Higher self-efficacy was observed within six months of care delivery and remained consistent throughout the study. 

“The D-CARE trial is the largest evaluation, to date, of different approaches to providing dementia care,” said Dr. David Reuben, Archstone Professor of Geriatrics at the David Geffen School of Medicine at UCLA and principal investigator of the study. “Caregivers play an essential role in the lives of individuals with dementia, and their ability to manage stress and feel confident in their caregiving roles is crucial. Higher self-efficacy may lead to obtaining more resources and keeping persons with dementia in their homes.”

The study just published in the peer-reviewed Journal of the American Medical Association.

Aims of the Dementia Care Study

Funded by the Patient-Centered Outcomes Research Institute and the National Institute on Aging, the D-CARE study aimed to compare the effectiveness of two established dementia care approaches to each other and usual care. It comprised 2,176 persons with dementia and their caregivers and was conducted from June 2019 to August 2023.

The study was led by investigators at UCLA with data management and statistics performed by the Yale Data Coordinating Center and was conducted at four clinical sites: Atrium Health Wake Forest Baptist, Baylor Scott & White Health, the University of Texas Medical Branch, and Geisinger Health. The study was supported by investigators at the Benjamin Rose Institute on Aging, the University of Oklahoma Health Sciences Center, Cedars-Sinai Medical Center and RAND. Participants were randomly assigned to one of three groups: health care system-based care delivered by Dementia Care Specialists (based on the UCLA Alzheimer’s and Dementia Care Program), community-based organization-based care delivered by Care Consultants (utilizing the Benjamin Rose Institute on Aging Care Consultation Program) or usual care. 

“The study’s results underscore the complexities of dementia care and the challenges in comparing dementia care models in a real-world setting, particularly during the COVID-19 pandemic,” Reuben said. “Moreover, some benefits of the models may not have been fully captured in the trial’s chosen primary and secondary outcomes.” 

The effects of the interventions on health care utilization are still pending.

How the Dementia Care Study results can help going forward

The findings from D-CARE have significant implications for health care systems, medical groups, community-based organizations, policymakers and insurers working to improve dementia care. The study suggests that while health system and community-based dementia programs may not outperform routine care in reducing caregiver strain or managing patient behaviors, these programs help caregivers navigate the challenges of dementia care more effectively. 

“These findings remind us that different approaches to dementia care can lead to comparable clinical outcomes and may be particularly valuable for institutions participating in the new Medicare Guiding an Improved Dementia Experience (GUIDE) program,” Reuben said. “Additional analyses of D-CARE will provide further insight into the effectiveness of health system and community-based dementia care.”

For more information about the D-CARE study and its findings, please visit https://www.dcare-study.org/ or contact Dr. David Reuben at [email protected].

Research reported in this press release is federally funded by the National Institute on Aging of the National Institutes of Health under the award number R01AG061078 and the Patient-Centered Outcomes Research Institute, a nonprofit organization, under contract number PCS-2017C1-6534. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health nor Patient-Centered Outcomes Research Institute.