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Study finds no differences between dementia care approaches on patient behavioral symptoms or caregiver strain

January 30, 2025

But the study, the largest pragmatic trial on dementia care, finds that comprehensive care improved caregiver self-efficacy

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 as usual care 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 6 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 appears in the Journal of the American Medical Association (JAMA).

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 to 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 University of California, Los Angeles, with data management and statistical analysis performed by the Yale Data Coordinating Center. The study 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 Yale Data Coordinating Center (DCC) is a partnership between the Yale Center for Statistical Analysis (YCAS) at the Yale School of Public Health (YSPH) and the Yale Program on Aging at the Yale School of Medicine that provides integrated biostatistics, data management, and informatics support for clinical trials and other research projects. Dr. Peter Peduzzi, PhD, professor emeritus of biostatistics at YSPH, thecurrently serves as Principal Investigator of the D-CARE DCC, while Katy Araujo, MPH, associate director for data management and informatics at the Yale Program on Aging, serves as head of data management and operations support. Dr. Thomas M. Gill, MD, director of the Yale Program on Aging, is a co-investigator on the study.

“We help refine research questions into concrete and testable hypotheses, make sure the methodology is appropriate and that we’re collecting all the necessary data, design and carry out the statistical analyses that best address those questions, and help to interpret and disseminate the results,” said Dr. Erich J. Greene, PhD, a research scientist at YCAS and senior author on the D-CARE study. “I’ve always been drawn to storytelling, and I sometimes think of my job as uncovering the story the data are trying to tell, putting it into a cohesive narrative, and keeping it strictly non-fiction.”

Dr. Gill echoed Greene's remarks.

“The aim of the YDCC is to ensure that clinical trials are efficiently and rigorously designed, conducted, and analyzed through the use of state-of-the-art data collection and tracking systems, quality control procedures, and statistical methods,” Gill said.

The D-CARE study was supported by investigators at the Benjamin Rose Institute on Aging, 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 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.

The findings from D-CARE have significant implications for healthcare 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.”

The D-CARE study is funded by the Patient-Centered Outcomes Research Institute (PCS-2017C1-6534), a nonprofit institution, and the National Institute on Aging (R01 AG061078). The awards include four clinical trial sites. Additional support was provided by the Yale Program on Aging/Claude D. Pepper Older Americans Independence Center (P30AG021342), The National Center for Advancing Translational Science (NCATS) a component of the National Institutes of Health (NIH) (UL1 TR000142), The Mexican Health and Aging Study (R01AG018016), The UTMB Claude D. Pepper Older Americans Independence Center (OAIC) (P30 AG024832), The Dewey and Cynthia Robertson Fund for Wake Forest Geriatrics and the Wake Forest Alzheimer's Disease Research Center (P30 AG049638).

For more information about the D-CARE study and its findings, please visit https://www.dcare-study.org/ or contact David Reuben, MD at dreuben@mednet.ucla.edu.