The largest nationwide pragmatic clinical trial 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 between care delivered through a health system, care provided by a community-based organization, or usual care over an 18-month period.
The findings appear online today in The Journal of the American Medical Association.
The Dementia Care Study (D-CARE), a clinical trial of 2,176 persons with dementia and their caregivers conducted between June 2019 to August 2023, found no evidence that dementia care provided by a dementia care specialist in a health care system was more effective at reducing patient behavioral symptoms and caregiver strain than care provided by a care consultant in a community-based organization. Additionally, neither of these approaches showed an advantage over routine (usual) dementia care. Caregiver strain, response to patient behavioral symptoms, and depression also did not differ across all three approaches over the 18-month study period.
However, caregiver self-efficacy—a measurement of caregivers’ confidence in managing dementia-related challenges and accessing support—improved comparably in both the health-system and community-based care approaches and was better than 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 David Reuben, M.D., 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.”
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 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, 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.
“Caregiving for individuals with dementia can be stressful and can have a negative impact on well-being,” said Jeff Williamson, M.D., M.H.S., professor of gerontology and geriatric medicine at Wake Forest University School of Medicine and the study’s site principal investigator at Atrium Health Wake Forest Baptist. “By improving self-efficacy, we not only improve the care of the person with dementia but also create a more positive caregiving experience.”
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. 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.
Read the full press release from UCLA.