I-CARE Rural Pilot: Intervention for Rural-Dwelling Dementia Caregivers

NCT ID: NCT07054385

Last Updated: 2025-11-13

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Clinical Phase

NA

Total Enrollment

60 participants

Study Classification

INTERVENTIONAL

Study Start Date

2025-07-01

Study Completion Date

2026-05-31

Brief Summary

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The purpose of this study is to assess feasibility and to estimate efficacy of our app "Brain CareNotes" for dementia caregivers who reside in a rural setting (as defined by RUCA codes 4 through 10). The Brain CareNotes app is designed to reduce informal caregiver burden of those caring for individuals with Alzheimer's disease and related dementias (ADRD) and behavioral and psychological symptoms of dementia (BPSD) of individuals with ADRD. The study will enroll up to 60 rural caregivers of community-dwelling individuals living with ADRD. Caregivers will be randomized to use the Brain CareNotes app or an attention control education-only app for six months, with usage reminders.

Detailed Description

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This study will evaluate the feasibility and estimate the effect of Brain CareNotes on caregiver burden and patient BPSD. The study will enroll up to 60 rural-dwelling caregivers. Participants will be randomized to use the Brain CareNotes app or an attention control education-only app (Dementia Guide Expert) for six months.

The primary objective is to evaluate the feasibility of Brain CareNotes, as assessed by caregiver-reported a) usability, as assessed by the 10-item Simplified System Usability Scale and b) acceptance as assessed by the 4-item Behavioral Intention questionnaire.

The secondary objective is to estimate the effect of Brain CareNotes on a) caregiver burden and b) patient BPSD at six months, compared to attention control. These outcomes are calculated using the caregiver-reported Neuropsychiatric Inventory (NPI): the NPI caregiver distress sub-score measures caregiver burden and the NPI total score measures patient BPSD. The investigators will obtain NPI responses from caregivers at baseline, three, and six months.

Exploratory objectives are to estimate the effect of Brain CareNotes on a) caregiver depressive symptoms and b) patient and caregiver acute care utilization at six months; and to examine early effects at three months on c) the usability and acceptance of Brain CareNotes, and d) caregiver burden and BPSD. Caregiver depressive symptoms will be assessed by the Patient Health Questionnaire-9 (PHQ-9), administered at baseline, three, and six months. Acute care utilization data will be obtained from self-reports to identify both caregivers' and patients' hospital and emergency visits that occurred within six months of enrollment.

Conditions

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Caregiver Burden Alzheimer Disease

Keywords

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Alzheimer disease and related dementias Caregiver Caregiver Burden Behavioral and psychological symptoms of dementia Rural

Study Design

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Allocation Method

RANDOMIZED

Intervention Model

PARALLEL

Participants will be randomized to receive the Brain CareNotes app or an attention control app.
Primary Study Purpose

SUPPORTIVE_CARE

Blinding Strategy

TRIPLE

Participants Investigators Outcome Assessors
The participant, primary investigator and outcome assessor will be masked to the app assignment (Brain CareNotes vs Attention Control App). The participant will be aware of the treatment received but is masked to whether the app they are assigned is the intervention versus control.

Study Groups

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Brain CareNotes App

The Brain CareNotes mobile telehealth app is used by unpaid caregivers for BPSD management. It includes remote communication with an external human support person-a care coach-as well as features for users to independently perform health-related activities.

Group Type EXPERIMENTAL

Brain CareNotes

Intervention Type BEHAVIORAL

The Brain CareNotes mobile telehealth app is used by unpaid caregivers for BPSD management. It includes remote communication with an external human support person-a care coach-as well as features for users to independently perform health-related activities.

Attention Control App

Dementia Guide Expert provides education only and no interactive BPSD management support, coaching, assessment, or external response. It contains "evidence-based expert information on what dementia is, types, contributing factors, risks, symptoms, stages, diagnosis, tests, treatment, management, communication techniques, and links to resources and support services."

Group Type ACTIVE_COMPARATOR

Dementia Guide Expert

Intervention Type BEHAVIORAL

Dementia Guide Expert provides education only and no interactive BPSD management support, coaching, assessment, or external response. It contains "evidence-based expert information on what dementia is, types, contributing factors, risks, symptoms, stages, diagnosis, tests, treatment, management, communication techniques, and links to resources and support services."

Interventions

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Brain CareNotes

The Brain CareNotes mobile telehealth app is used by unpaid caregivers for BPSD management. It includes remote communication with an external human support person-a care coach-as well as features for users to independently perform health-related activities.

Intervention Type BEHAVIORAL

Dementia Guide Expert

Dementia Guide Expert provides education only and no interactive BPSD management support, coaching, assessment, or external response. It contains "evidence-based expert information on what dementia is, types, contributing factors, risks, symptoms, stages, diagnosis, tests, treatment, management, communication techniques, and links to resources and support services."

Intervention Type BEHAVIORAL

Eligibility Criteria

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Inclusion Criteria

* Self-identified primary unpaid rural (RUCA Code of 4-10) caregiver of a person diagnosed with ADRD (at any stage) who are:
* Receiving primary care and
* Community-dwelling;
* English literate;
* Age ≥ 18 years

Exclusion Criteria

* Care recipient is a permanent resident of an extended care facility (nursing home);
* Involvement in another clinical trial that would prevent or interfere with study objectives;
* Sensory or other impairment prohibiting the use of a mobile touchscreen device or other study activity (after correction)
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Richard Holden

OTHER

Sponsor Role lead

Responsible Party

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Richard Holden

Principal Investigator

Responsibility Role SPONSOR_INVESTIGATOR

Principal Investigators

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Jordan R Hill, PhD

Role: PRINCIPAL_INVESTIGATOR

Indiana University, Bloomington

Richard J Holden, PhD

Role: PRINCIPAL_INVESTIGATOR

Indiana University, Bloomington

Locations

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Indiana University Bloomington

Bloomington, Indiana, United States

Site Status RECRUITING

Countries

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United States

Central Contacts

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Jordan R Hill, PhD

Role: CONTACT

Phone: (812) 856-5032

Email: [email protected]

Richard J Holden, PhD

Role: CONTACT

Phone: (317) 278-5323

Email: [email protected]

Facility Contacts

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Addison Harrington, BS

Role: primary

Other Identifiers

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27397

Identifier Type: -

Identifier Source: org_study_id