D-CARE - The Dementia Care Study: A Pragmatic Clinical Trial of Health System-Based Versus Community-Based Dementia Care

NCT ID: NCT03786471

Last Updated: 2025-01-30

Study Results

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Basic Information

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Recruitment Status

COMPLETED

Clinical Phase

NA

Total Enrollment

2176 participants

Study Classification

INTERVENTIONAL

Study Start Date

2019-06-28

Study Completion Date

2023-08-21

Brief Summary

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D-CARE: The Dementia Care Study

This pragmatic randomized clinical trial of 2150 persons with dementia and their caregivers, at four diverse clinical trial sites in the United States, compares the effectiveness and cost-effectiveness of 18 months of health systems-based dementia care provided by a Dementia Care Specialist (nurse practitioner or physician assistant) who works within the heath system versus community-based dementia care provided by a Care Consultant (social worker, nurse, or therapist) who works at a Community-Based Organization (CBO).

The trial will also compare the effectiveness and cost-effectiveness of both models versus usual care.

Detailed Description

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D-CARE: The Dementia Care Study

Objective: To determine the comparative effectiveness and cost-effectiveness of two evidence-based models of comprehensive dementia care, as well as the effectiveness and cost-effectiveness of both models versus usual care.

Design: A pragmatic randomized 3-arm superiority trial. The unit of randomization is the patient/caregiver dyad.

Duration: 6.5 years. This includes 34 months for recruitment of study participants, 18 months of interventions/usual care, and simultaneously 18 months of follow-up for research purposes.

Conditions

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Dementia

Study Design

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Allocation Method

RANDOMIZED

Intervention Model

PARALLEL

* 2150 dyads of persons with dementia and their respective primary caregiver
* 1000 in each intervention arm, and 150 in the usual care arm
Primary Study Purpose

SUPPORTIVE_CARE

Blinding Strategy

DOUBLE

Investigators Outcome Assessors

Study Groups

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Community-Based Dementia Care

Dementia care that is based in community organizations, which gives equal attention to patients and their primary family or friend caregivers. The community-based dementia care arm uses Care Consultants (social workers, nurses, or licensed therapist). Patients with dementia are engaged in the program whenever possible. Caregivers can be the sole program participant, when patients are too impaired. The program establishes a long-term relationship between Care Consultants and families. The exact content of assistance provided is tailored to the preferences of individual patients and caregivers, and is holistic in the range of potential concerns of problems addressed. The Community-Based Dementia Care arm is based on the Benjamin Rose Institute on Aging's Care Consultation Program.

Group Type ACTIVE_COMPARATOR

Community-based Dementia Care

Intervention Type OTHER

Active comparator

Usual Care

Dementia care that most closely corresponds to traditional care. This arm will also receive standardized educational materials (hard copies and internet-based resources), referral to the Alzheimer's Association 1-800 national helpline to speak to a master's level consultant for decision-making support, crisis assistance, and caregiver education, as well as referral to local programs and services.

Group Type OTHER

Usual Care

Intervention Type OTHER

Control

Health Systems-Based Dementia Care

Dementia care that is based in the health care system, which partners with community-based organizations to provide comprehensive, coordinated, patient-centered care. The health system-based dementia care arm uses a Dementia Care Specialist (Nurse Practitioner or Physician Assistant) supervised by a physician to tailor and facilitate dementia care delivery in collaboration with the primary care physician (co-management). The Health Systems-Based Dementia Care arm is based on UCLA's Alzheimer's and Dementia Care Program.

Group Type ACTIVE_COMPARATOR

Health System-based Dementia Care

Intervention Type OTHER

Active comparator

Interventions

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Health System-based Dementia Care

Active comparator

Intervention Type OTHER

Community-based Dementia Care

Active comparator

Intervention Type OTHER

Usual Care

Control

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* The person with dementia has a diagnosis of dementia established by a physician or other primary care provider
* The person with dementia has a primary care provider who is willing to partner with the study
* The person with dementia has a caregiver who speaks English or Spanish, and has a phone

Exclusion Criteria

* The person with dementia resides in a nursing home at the time of recruitment
* The person with dementia is enrolled in hospice at the time of screen
* The person with dementia plans to move out of the area within the coming year
* The caregiver of the person with dementia is unwilling or anticipates being incapable of providing self-reported outcome measures for 18 months
* Baseline measures refused or not completed
* The caregiver is paid, and is not a relative or close friend of the person with dementia
* At telephone or in-person screener, the caregiver has cognitive impairment
* The person with dementia or caregiver is participating in another dementia intervention study
* Patients and caregivers who are members of a sites' Local Patient \& Stakeholder Committee
* There is already a member of the same household participating in the study.
Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Patient-Centered Outcomes Research Institute

OTHER

Sponsor Role collaborator

National Institute on Aging (NIA)

NIH

Sponsor Role collaborator

Yale University

OTHER

Sponsor Role collaborator

Benjamin Rose Institute on Aging

OTHER

Sponsor Role collaborator

Baylor Scott and White Health

OTHER

Sponsor Role collaborator

Wake Forest University Health Sciences

OTHER

Sponsor Role collaborator

University of Texas

OTHER

Sponsor Role collaborator

Geisinger Clinic

OTHER

Sponsor Role collaborator

University of Oklahoma

OTHER

Sponsor Role collaborator

RAND

OTHER

Sponsor Role collaborator

University of California, Los Angeles

OTHER

Sponsor Role lead

Responsible Party

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David B. Reuben, MD

Director, Multicampus Program in Geriatric Medicine & Gerontology; Chief, Division of Geriatrics

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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David Reuben, MD

Role: PRINCIPAL_INVESTIGATOR

University of California, Los Angeles

Thomas Gill, MD

Role: PRINCIPAL_INVESTIGATOR

Yale University

David Bass, PhD

Role: PRINCIPAL_INVESTIGATOR

Benjamin Rose Institute on Aging

Lee Jennings, MD

Role: PRINCIPAL_INVESTIGATOR

University of Oklohoma

Maya Lichtenstein, MD

Role: PRINCIPAL_INVESTIGATOR

Geisinger Clinic

Peter Peduzzi, PhD

Role: PRINCIPAL_INVESTIGATOR

Yale University

Alan Stevens, PhD

Role: PRINCIPAL_INVESTIGATOR

Baylor Scott and White Health

Elena Volpi, MD, PhD

Role: PRINCIPAL_INVESTIGATOR

The University of Texas Health Science Center at San Antonio

Jeffrey Williamson, MD

Role: PRINCIPAL_INVESTIGATOR

Wake Forest University Health Sciences

Christopher Callahan, MD

Role: STUDY_CHAIR

Indiana University

Katie Maslow, MSW

Role: STUDY_CHAIR

Gerontological Society of America

Jenny Summapund, MA

Role: STUDY_DIRECTOR

University of California, Los Angeles

Locations

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Wake Forest Baptist Medical Center

Winston-Salem, North Carolina, United States

Site Status

Geisinger Health

Wilkes-Barre, Pennsylvania, United States

Site Status

University of Texas Medical Branch

Galveston, Texas, United States

Site Status

Baylor Scott & White

Temple, Texas, United States

Site Status

Countries

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United States

References

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Reuben DB, Stevens AB, Gill TM, Williamson J, Volpi E, Lichtenstein ML, Jennings LA, Galloway R, Summapund J, Araujo K, Bass D, Weitzman L, Tan ZS, Evertson LC, Yang M, Green AS, Samper-Ternent R, Borek P, Xu Y, Peduzzi P, Greene EJ; D-CARE Study. Patient and Caregiver Outcomes of Health System, Community-Based, and Usual Dementia Care: A Prespecified Analysis of the Dementia Care Study (D-CARE) Randomized Clinical Trial. JAMA Intern Med. 2025 Sep 2:e254247. doi: 10.1001/jamainternmed.2025.4247. Online ahead of print.

Reference Type DERIVED
PMID: 40892399 (View on PubMed)

Reuben DB, Gill TM, Stevens A, Williamson J, Volpi E, Lichtenstein M, Jennings LA, Galloway R, Summapund J, Araujo K, Bass D, Weitzman L, Tan ZS, Evertson L, Yang M, Currie K, Green AS, Godoy S, Abraham S, Reese J, Samper-Ternent R, Hirst RM, Borek P, Charpentier P, Meng C, Dziura J, Xu Y, Skokos EA, He Z, Aiudi S, Peduzzi P, Greene EJ; D-CARE Study. Health System, Community-Based, or Usual Dementia Care for Persons With Dementia and Caregivers: The D-CARE Randomized Clinical Trial. JAMA. 2025 Mar 18;333(11):950-961. doi: 10.1001/jama.2024.25056.

Reference Type DERIVED
PMID: 39878968 (View on PubMed)

Provided Documents

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Document Type: Study Protocol

View Document

Document Type: Statistical Analysis Plan

View Document

Document Type: Informed Consent Form

View Document

Other Identifiers

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R01AG061078-01

Identifier Type: NIH

Identifier Source: secondary_id

View Link

PCS-2017C1-6534

Identifier Type: OTHER_GRANT

Identifier Source: secondary_id

IRB 18-001796

Identifier Type: -

Identifier Source: org_study_id

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