D-CARE: The Dementia Care Study: Design of a Pragmatic Trial of the Effectiveness and Cost Effectiveness of Health System-Based Versus Community-Based Dementia Care Versus Usual Dementia Care
- PMID: 32949145
- PMCID: PMC8086629
- DOI: 10.1111/jgs.16862
D-CARE: The Dementia Care Study: Design of a Pragmatic Trial of the Effectiveness and Cost Effectiveness of Health System-Based Versus Community-Based Dementia Care Versus Usual Dementia Care
Erratum in
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Erratum.J Am Geriatr Soc. 2022 Jun;70(6):E19. doi: 10.1111/jgs.17200. Epub 2021 Apr 30. J Am Geriatr Soc. 2022. PMID: 33929727 No abstract available.
Abstract
Background/objectives: Although several approaches have been developed to provide comprehensive care for persons living with dementia (PWD) and their family or friend caregivers, the relative effectiveness and cost effectiveness of community-based dementia care (CBDC) versus health system-based dementia care (CBDC) and the effectiveness of both approaches compared with usual care (UC) are unknown.
Design: Pragmatic randomized three-arm superiority trial. The unit of randomization is the PWD/caregiver dyad.
Setting: Four clinical trial sites (CTSs) based in academic and clinical health systems.
Participants: A total of 2,150 English- or Spanish-speaking PWD who are not receiving hospice or residing in a nursing home and their caregivers.
Interventions: Eighteen months of (1) HSDC provided by a nurse practitioner or physician's assistant dementia care specialist who works within the health system, or (2) CBDC provided by a social worker or nurse care consultant who works at a community-based organization, or (3) UC with as needed referral to the Alzheimer's Association Helpline.
Measurements: Primary outcomes: PWD behavioral symptoms and caregiver distress as measured by the Neuropsychiatric Inventory Questionnaire (NPI-Q) Severity and Modified Caregiver Strain Index scales.
Secondary outcomes: NPI-Q Distress, caregiver unmet needs and confidence, and caregiver depressive symptoms. Tertiary outcomes: PWD long-term nursing home placement rates, caregiver-reported PWD functional status, cognition, goal attainment, "time spent at home," Dementia Burden Scale-Caregiver, a composite measure of clinical benefit, Quality of Life of persons with dementia, Positive Aspects of Caregiving, and cost effectiveness using intervention costs and Medicare claims.
Results: The results will be reported in the spring of 2024.
Conclusion: D-CARE will address whether emphasis on clinical support and tighter integration with other medical services has greater benefit than emphasis on social support that is tied more closely to community resources. It will also assess the effectiveness of both interventions compared with UC and will evaluate the cost effectiveness of each intervention.
Keywords: Alzheimer's disease; care coordination; dementia; pragmatic trials.
© 2020 The American Geriatrics Society.
Conflict of interest statement
Conflict of Interest
The D-CARE study is funded by the Patient-Centered Outcomes Research Institute, a nonprofit institution, and the National Institute on Aging. The award includes four clinical trial sites. The collaborative work on this manuscript was completed by study investigators and staff who receive salaries and benefits from these funders.
References
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- 2020 Alzheimer's disease facts and figures [published online ahead of print, 2020 March 10]. Alzheimers Dement. 2020;10.1002/alz.12068. doi:10.1002/alz.12068 - DOI
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- Haggerty KL, Epstein-Lubow, Spragens L, Stoeckle RJ, Evertson L, Jennings LA, Reuben DB. Recommendations to improve payment policies for comprehensive dementia care (in press, Journal of the American Geriatrics Society) - PubMed
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- Reuben DB, Evertson LC, Wenger NS, Serrano K, Chodosh J, Ercoli L, Tan ZS. The University of California at Los Angeles Alzheimer's and Dementia Care program for comprehensive, coordinated, patient-centered care: preliminary data. J Am Geriatr Soc. 2013. December;61(12):2214–8. doi: 10.1111/jgs.12562. Epub 2013 Dec 3. PubMed PMID: 24329821; PubMed Central PMCID: PMC3889469 - DOI - PMC - PubMed
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