NCT05733520

Brief Summary

This study is a randomized, controlled trial (RCT) to evaluate the effect of Brain CareNotes (a mobile health application) on the burden experienced by unpaid caregivers of patients with dementia and on the behavioral and psychological symptoms of dementia (BPSD) displayed by care recipients. Over 39 months, the trial will enroll 184 caregivers of community-dwelling patients diagnosed with Alzheimer's disease or a related dementia (ADRD). Caregivers will be randomized to use the Brain CareNotes app or an attention control education-only app for 12 months, with usage reminders.

Trial Health

77
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
184

participants targeted

Target at P75+ for not_applicable

Timeline
15mo left

Started May 2023

Longer than P75 for not_applicable

Geographic Reach
1 country

2 active sites

Status
recruiting

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

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Study Timeline

Key milestones and dates

Study Progress71%
May 2023Jul 2027

First Submitted

Initial submission to the registry

February 8, 2023

Completed
9 days until next milestone

First Posted

Study publicly available on registry

February 17, 2023

Completed
3 months until next milestone

Study Start

First participant enrolled

May 30, 2023

Completed
4.2 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

July 30, 2027

Expected
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

July 30, 2027

Last Updated

November 24, 2025

Status Verified

November 1, 2025

Enrollment Period

4.2 years

First QC Date

February 8, 2023

Last Update Submit

November 19, 2025

Conditions

Keywords

Alzheimer's disease and related dementiasCaregiverCaregiver BurdenBehavioral and psychological symptoms of dementia

Outcome Measures

Primary Outcomes (2)

  • Caregiver Burden

    The burden experienced by caregivers caused by their caregiving responsibilities measured by the Neuropsychiatric Inventory (NPI) caregiver distress sub-score. The distress score is calculated by adding the distress score for each of the 12 items of the NPI. A score of 0 would indicate that the BPSD cause no distress while a score of 60 would indicate that each symptom causes severe distress for the caregiver.

    12 months

  • Patient BPSD

    Behavioral (e.g. agitation, aggression, wandering) and psychological (e.g. delusions, hallucinations) symptoms of dementia as measured by the Neuropsychiatric Inventory (NPI). The NPI is a 12-item questionnaire. The total score is calculated by adding the product of the frequency and severity of those 12 items. A score of 0 would indicate that no symptoms are present while a score of 144 would indicate that all symptoms are present at the highest level of frequency and severity.

    12 months

Secondary Outcomes (3)

  • Caregiver Depressive Symptoms

    12 months

  • Caregiver Acute Care Utilization

    12 months

  • Patient Acute Care Utilization

    12 months

Other Outcomes (5)

  • Caregiver Self-efficacy

    12 months

  • Caregiver Social Support

    12 months

  • System Usability Scale

    12 months

  • +2 more other outcomes

Study Arms (2)

Brain CareNotes App

EXPERIMENTAL
Behavioral: Brain CareNotes

Attention Control App

ACTIVE COMPARATOR
Behavioral: Dementia Guide Expert

Interventions

Brain CareNotesBEHAVIORAL

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.

Brain CareNotes 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."

Attention Control App

Eligibility Criteria

Age18 Years+
Sexall
Healthy VolunteersNo
Age GroupsAdult (18-64), Older Adult (65+)

You may qualify if:

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

You may not qualify if:

  • 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)

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (2)

IU Health

Indianapolis, Indiana, 46202, United States

RECRUITING

Community Health Network

Indianapolis, Indiana, 46203, United States

RECRUITING

MeSH Terms

Conditions

Caregiver BurdenAlzheimer DiseaseBehavior

Condition Hierarchy (Ancestors)

Stress, PsychologicalBehavioral SymptomsDementiaBrain DiseasesCentral Nervous System DiseasesNervous System DiseasesTauopathiesNeurodegenerative DiseasesNeurocognitive DisordersMental Disorders

Study Officials

  • Richard J Holden, PhD

    Indiana University

    PRINCIPAL INVESTIGATOR
  • Malaz Boustani, MD

    Indiana University

    PRINCIPAL INVESTIGATOR

Central Study Contacts

Miriam J Rodriguez, PhD

CONTACT

Jordan R Hill, PhD

CONTACT

Study Design

Study Type
interventional
Phase
not applicable
Allocation
RANDOMIZED
Masking
DOUBLE
Who Masked
INVESTIGATOR, OUTCOMES ASSESSOR
Masking Details
The primary investigator and outcome assessor will be masked to the App assignment (Brain CareNotes vs Attention Control App)
Purpose
SUPPORTIVE CARE
Intervention Model
PARALLEL
Model Details: Participants will be randomized to receive the Brain CareNotes app or an attention control app.
Sponsor Type
OTHER
Responsible Party
PRINCIPAL INVESTIGATOR
PI Title
Department Chair, Dean's Eminent Scholar & Professor

Study Record Dates

First Submitted

February 8, 2023

First Posted

February 17, 2023

Study Start

May 30, 2023

Primary Completion (Estimated)

July 30, 2027

Study Completion (Estimated)

July 30, 2027

Last Updated

November 24, 2025

Record last verified: 2025-11

Data Sharing

IPD Sharing
Will not share

Locations