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A trial found system- and community-based dementia care had no advantage over usual care, except for improved caregiver self-efficacy at 6 months.
A study found no significant differences between system-based, community-based, and usual dementia care.1
Alzheimer dementia, estimated to have affected 6.9 US million residents in 2024, impacts both the person living with dementia and the caregiver.2 Dementia care programs offer support and can be based in health care systems or community-based organizations.3
Despite several dementia care models, the effectiveness of different approaches to dementia care has yet to be evaluated.1 Investigators sought to assess the effectiveness of health system-based, community-based, and usual dementia care among patients with dementia and caregivers. They conducted a randomized clinical trial of community-dwelling individuals living with dementia and their caregivers at 4 sites in the US.
“This study was designed to test whether dementia care with emphasis on clinical support and tighter integration with other medical services or dementia care with emphasis on social support that is more closely tied to community resources provides greater benefit compared with each other or with usual care,” wrote investigators, led by David B. Reuben, MD, from David Geffen School of Medicine at UCLA.
Participants, enrolled from June 2019 – January 2025, were randomized participants 7:7:1 to health system-based care provided by an advanced practice dementia care specialist (n = 1016), community-based supplied by a social worker, nurse, or licensed therapist care consultant (n = 1016), or usual care (n = 144). The final follow-up was in August 2023.
The primary outcomes were a caregiver-reported Neuropsychiatric Inventory Questionnaire (NPI-Q) severity score for people living with dementia and a Modified Caregiver Strain Index for caregivers. The secondary outcome was caregiver self-efficacy.
The study included 2176 dyads; individuals with dementia (58.5% female; 20.6% Black/Hispanic) had a mean age of 80.6 years, and caregivers (75.8% female; 20.8% Black/Hispanic) had a mean age of 65.2 years. Among everyone enrolled, only 62% completed the study through 18 months.
The least squares mean (LSMs) for NPI-Q scores were 9.8 for system-based, 9.5 for community-based, and 10.1 for usual care. Investigators ultimately observed no significant differences between system-based or community-based dementia care (0.30; 97.5% CI, -0.18 to 0.78), as well as between the 2 treatments and usual care (system based, -0.33; 97.5% CI, -1.32 to 0.67; community-based, -0.62; 95% CI, -1.61 to 0.37).
For the Modified Caregiver Strain Index, the least squares means were 10.7 for system-based, 10.5 for community-based, and 10.6 for usual care. Again, there were no significant differences between system-based or community-based dementia care (0.25; 97.5% CI, -0.16 to 0.66) and between the 2 treatments and usual care (system-based, 0.14; 97.5% CI, -0.70 to 0.99; community-based, -0.10; 97.5% CI, -0.94 to 0.74).
The only meaningful finding was that caregiver self-efficacy was significantly greater for both treatments compared with usual care (system-based, 0.70; 95% CI, 0.26 – 1.14; community-based, 0.85; 95% CI, 0.42 to 1.29) but not between treatments (-0.16; 95% CI, -0.37 to 0.06). The least-square means were 15.1 for system-based, 15.2 for community-based, and 14.4 for usual care.
The benefit of system-based and community-based care on caregiver self-efficacy occurred by 6 months. Caregiver self-efficacy has many advantages, including the ability to care for an individual with dementia at home, reduced health care or emergency department utilization, and more positive feelings about caregiving. However, these benefits need to be confirmed with future research.
Investigators noted that the lack of difference between dementia care approaches may be due to the selected primary outcomes, evaluated with standardized instruments of behavioral symptoms and caregiver strain. However, behavioral and psychological symptoms of dementia and caregiver strain tend to increase over time. In this study, with the way it was measured, these symptoms remained relatively stable over 18 months.
The team pointed out several limitations, such as not evaluating all evidence-based models of dementia care, having insufficient power to assess subgroups (for instance, rural vs urban or more vs less severe dementia), and conducting most of the trial during the COVID-19 pandemic which could have impacted the ability to fully deliver dementia care.
“The findings from this study are particularly timely as Medicare’s new Guiding an Improved Dementia Experience (GUIDE) model, which pays for comprehensive dementia care and caregiver support, is implemented,” investigators concluded. “Requirements for GUIDE can be met using either health system– or community-based approaches, and new GUIDE programs, which have a 1-year run-in period, may use D-CARE findings to plan implementation.”
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