OU Faculty Member Co-Leads Newly Published Study Comparing Types of Dementia Care

Lee Jennings, M.D., a geriatrician and researcher at the University of Oklahoma College of Medicine, is a co-investigator on the largest nationwide pragmatic clinical trial comparing different approaches to dementia care for people with Alzheimer’s disease and other dementias. The study found no significant differences in patient behavioral symptoms or caregiver strain between care delivered through a health system, care provided by a community-based organization, or 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 six months of care delivery and remained consistent throughout the study.

Results of the Dementia Care Study (D-CARE) are published in The Journal of the American Medical Association. The clinical trial was conducted between June 2019 to August 2023 and included 2,176 persons with dementia and their caregivers.

“These findings demonstrate that different evidence-based approaches to dementia care, whether based primarily in a health system or in a community organization, can lead to comparable outcomes for patients and that both approaches improved caregivers’ perceived ability to manage dementia-related challenges over usual care. This has important implications for health systems participating in the new CMS Guiding an Improved Dementia Care Experience (GUIDE) model,” said Jennings, who co-chaired the assessment and outcomes committee.

The study’s results underscore the complexities of dementia care and the challenges in comparing dementia care models in a real-world setting. 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 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.

“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 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.”

Because of the strength of the D-CARE study and the wealth of data it collected, Jennings earned a $2.3 million grant from the National Institutes of Health to analyze the end-of-life experiences of study participants. She is using the available data to determine whether the actual care they received aligned with their preferences.

“Care toward the end of life involves listening to patients, documenting their wishes and coordinating their care around those wishes,” Jennings said. “If dementia care programs are doing their job, patients should have their symptoms controlled, their spiritual and emotional needs addressed, and their goals of care should align with the treatment they receive. This study allows us to use the data from D-CARE to look deeper at end-of-life care to see what is working well and what needs to be refined.”

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About the project:

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. The study was led by investigators at University of California, Los Angeles, with data management and statistics performed by the Yale Data Coordinating Center and was conducted at four clinical sites: Atrium 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, University of Oklahoma Health Sciences Center, Cedars-Sinai Medical Center, and RAND. Participants were randomly assigned to one of three care models: a health care system-based care delivered by Dementia Care Specialists (based on the UCLA Alzheimer’s and Dementia Care Program), a community-based organization-based care delivered by Care Consultants (utilizing Benjamin Rose Institute on Aging [BRI] Care Consultation Program), or usual 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).