A new analysis comparing different dementia care approaches found that caregivers of people living with Alzheimer’s disease and other dementias reported greater satisfaction with care provided through either of two comprehensive dementia care programs, compared with routine (usual) care, over an 18-month period.
The Dementia Care Study, also known as D-CARE, compared three different approaches to delivering dementia care: a health system-based program, a community-based program, and usual care. The trial included 2,176 persons with dementia and their caregivers and was conducted from June 2019 to August 2023. The study’s primary findings, previously published in JAMA, showed no differences in patient behavioral symptoms or caregiver strain, depression, or distress between dementia care approaches; but did show improved caregiver self-efficacy (confidence in ability to care for their loved ones).
Additional analysis in the new report, published September 2 in JAMA Internal Medicine, found no significant differences between the health system-based and community-based groups in other clinical outcomes for people living with dementia, such as cognition, ability to perform daily activities, and quality of life. Similarly, caregiver outcomes – such as caregiver burden and positive aspects of caregiving – were comparable across all groups.
However, caregiver satisfaction with care — a measurement of caregivers’ satisfaction with the dementia care their loved ones received — was greater in both the health-system and community-based care approaches than in those receiving usual care. Higher caregiver satisfaction with care was observed after 3 months of care delivery and remained consistent throughout the 18-month study. Caregivers in the community-based program reported slightly more satisfaction overall.
In addition, caregiver rating of dementia care quality — a measure of how well caregivers felt the care team communicated, coordinated services, provided support, and met the needs of both patients and families — was reported to be slightly higher in the community-based dementia care program compared to usual care.
“These findings give us a closer look at what matters most to families,” said Dr. David Reuben, Archstone Professor of Geriatrics at the David Geffen School of Medicine at UCLA and principal investigator of the D-CARE study. “Even when standardized clinical outcomes do not change, caregivers notice and value improvements in the way dementia care is delivered. That kind of support can make a real difference in their experience of caring for a loved one with dementia.”
D-CARE 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 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 D-CARE trial was designed to provide real-world evidence on the effectiveness of dementia care delivery models at a time when health systems, policymakers, and payers are seeking scalable approaches to support the growing population of people with dementia and their caregivers. The study’s findings underscore the importance of evaluating caregiver perspectives in addition to traditional health outcomes and point toward future opportunities to refine dementia care models.
“These additional findings build on the initial findings of the D-CARE trial by showing that, even without measurable changes in clinical outcomes, caregivers perceive real benefits in how care is delivered,” Reuben said. “These findings can inform policy and programs, particularly Medicare’s Guiding an Improved Dementia Experience (GUIDE) model, by showing that caregivers’ satisfaction is an important factor to be considered when designing a high-quality dementia program.”
The study will also examine the effects of the dementia programs on health care utilization.
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).