A recent analysis from the Dementia Care Study (D-CARE) indicates that caregivers of individuals with Alzheimer’s disease and other dementias reported higher satisfaction with care when involved in comprehensive dementia care programs, compared to those receiving routine care. The study observed these outcomes over an 18-month period.
The D-CARE trial compared three models for delivering dementia care: a health system-based program, a community-based program, and usual care. Conducted between June 2019 and August 2023, the trial included 2,176 participants living with dementia and their caregivers. While the primary findings published in JAMA showed no significant differences in patient behavioral symptoms or caregiver strain, depression, or distress across the different approaches, there was an improvement in caregiver self-efficacy.
Further analysis published on September 2 in JAMA Internal Medicine found no significant clinical outcome differences—such as cognition or ability to perform daily activities—between the health system-based and community-based groups. Caregiver outcomes like burden and positive aspects of caregiving were also similar across all groups.
However, both health-system and community-based programs led to greater caregiver satisfaction with care than usual care. This increased satisfaction was evident after three months of care delivery and continued throughout the study’s duration. Caregivers participating in the community-based program reported slightly higher overall satisfaction.
Additionally, caregivers rated dementia care quality—how well teams communicated, coordinated services, provided support, and met family needs—as slightly better within the community-based program compared to usual care.
“These findings give us a closer look at what matters most to families,” said Archstone Professor of Geriatrics at the University of California, Los Angeles (UCLA), who served as principal investigator for D-CARE. “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.”
The D-CARE study was led by UCLA researchers with data management by Yale Data Coordinating Center. Clinical sites included Atrium Health Wake Forest Baptist, Baylor Scott & White Health, University of Texas Medical Branch (UTMB), and Geisinger Health. Additional support came from organizations such as Benjamin Rose Institute on Aging and Cedars-Sinai Medical Center. Participants were randomly assigned to receive either health system-based specialist-led care modeled after UCLA’s Alzheimer’s and Dementia Care Program; community organization-delivered consultation based on Benjamin Rose Institute’s model; or usual standard-of-care practices.
The trial aimed to provide practical evidence about effective ways to deliver dementia care as policymakers seek scalable solutions for supporting people living with dementia along with their families. Findings highlight the importance of considering caregiver perspectives alongside traditional clinical measures when refining future models for dementia services.
“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.”
Researchers will continue evaluating how these programs affect healthcare utilization among participants.
Funding for D-CARE came from multiple sources including Patient-Centered Outcomes Research Institute (PCS-2017C1-6534), National Institute on Aging (R01 AG061078), Yale Program on Aging/Claude D. Pepper Older Americans Independence Center (P30AG021342), National Center for Advancing Translational Science (UL1 TR000142), Mexican Health and Aging Study (R01AG018016), UTMB Claude D. Pepper OAIC (P30 AG024832), Dewey and Cynthia Robertson Fund for Wake Forest Geriatrics, and Wake Forest Alzheimer’s Disease Research Center (P30 AG049638).
