---
title: End-of-life Intervention for African American Dementia Caregivers
nct_id: NCT03323411
overall_status: COMPLETED
sponsor: University of Illinois at Chicago
study_type: OBSERVATIONAL
primary_condition: Encephalopathy, Ischemic
canonical_url: "https://parkinsonspathways.com/agent/trials/NCT03323411.md"
clinicaltrials_gov: "https://clinicaltrials.gov/study/NCT03323411"
ct_last_update_post_date: 2019-12-10
last_seen_at: "2026-05-12T06:33:51.585Z"
source: ClinicalTrials.gov (mirrored, no enrichment)
---
# End-of-life Intervention for African American Dementia Caregivers

**Official Title:** Community-based End-of-Life Intervention for African American Dementia Caregivers

**NCT ID:** [NCT03323411](https://clinicaltrials.gov/study/NCT03323411)

## Key Facts

- **Status:** COMPLETED
- **Study Type:** OBSERVATIONAL
- **Target Enrollment:** 355
- **Lead Sponsor:** University of Illinois at Chicago
- **Collaborators:** National Institute on Aging (NIA)
- **Conditions:** Encephalopathy, Ischemic
- **Start Date:** 2013-08-15
- **Completion Date:** 2019-05-31
- **CT.gov Last Update:** 2019-12-10

## Brief Summary

In a community-based approach, the investigators long-term goal is to empower African American family caregivers who are designated healthcare proxies to make informed end-of-life treatment decisions for participants with moderate to severe dementia before a life-threatening medical crisis occurs.

## Detailed Description

The investigators conducted a randomized controlled trial for efficacy of the Advance Care Treatment Program in an African American church-based community model. The investigators compared the effect of the experimental and control groups on knowledge, self-efficacy, intentions and behaviors from 4 urban African American churches randomly assigned to experimental (n=2) or control (n=2) conditions,304 (experimental n=152; control (n=152) health care proxies of participants that have advanced stage dementia: (a) were concurrently recruited in small classes each with 8-9 healthcare proxies.

## Eligibility

- **Sex:** ALL
- **Healthy Volunteers:** Yes

```
"Inclusion Criteria"

* Caregiver spouse or adult child of care recipient
* Caregiver knowledgeable about care recipient's medical history
* Care recipient must be African American
* Care recipient must have moderate to severe stage dementia
* Care recipient must lack decisional capacity

"Exclusion Criteria"

* Not a caregiver
* Care recipient not African American,
* Care recipient without moderate to severe dementia
```

## Arms

- **Intervention and attention control** — the Advance Care Treatment Plan experimental group received education on dementia cardiopulmonary resuscitation and tube feeding. The attention control group received education on exercise stress control diabetes and hypertension

## Interventions

- **Advance Care Treatment Plan** (BEHAVIORAL) — subjects in experimental group are taught information on dementia mechanical ventilation tube feeding and cardiopulmonary resuscitation

## Primary Outcomes

- **Knowledge of dementia** _(time frame: Three years)_ — Knowledge of Dementia Scale measures Knowledge of dementia with 17 dichotomous true/false items, maximum total score = 17 and Cronbach's α=.76. Higher scores indicate greater practical understanding of dementia knowledge
- **Knowledge of cardiopulmonary resuscitation (CPR), mechanical ventilation (MV), tube feeding (TF)** _(time frame: Three years)_ — Knowledge of CPR, MV, and TF Scale mmeasures CPR, MV and TF with 18-items Likert (5-point) and yes/no questions. Higher scores indicate increased general knowledge of CPR, MV and TF.
- **Self efficacy** _(time frame: Three years)_ — Confidence in Treatment Decisions Made Scale measures self-efficacy on decision choices for CPR, MV, and TF with12-item Likert scale (1=extremely comfortable to 5=not at all comfortable) and Cronbach α=.93
- **Intention to make a Care Plan** _(time frame: Three years)_ — Treatment Decisions Questionnaire measured Intention to make a Care Plan using the 3-item dichotomous (yes/no) items on each CPR, MV and TF.

## Secondary Outcomes

- **Written Care Plan** _(time frame: 3 years)_

## Recent Field Changes (last 30 days)

- `status.overallStatus` — added _(2026-05-12)_
- `status.primaryCompletionDate` — added _(2026-05-12)_
- `status.completionDate` — added _(2026-05-12)_
- `status.lastUpdatePostDate` — added _(2026-05-12)_
- `design.enrollmentCount` — added _(2026-05-12)_
- `eligibility.criteria` — added _(2026-05-12)_
- `eligibility.sex` — added _(2026-05-12)_
- `outcomes.primary` — added _(2026-05-12)_
- `outcomes.secondary` — added _(2026-05-12)_
- `armsInterventions.arms` — added _(2026-05-12)_
- `armsInterventions.interventions` — added _(2026-05-12)_
- `sponsor.lead` — added _(2026-05-12)_
- `sponsor.collaborators` — added _(2026-05-12)_
- `results.hasResults` — added _(2026-05-12)_

---

*Canonical: https://parkinsonspathways.com/agent/trials/NCT03323411.md*  
*Source data (authoritative): https://clinicaltrials.gov/study/NCT03323411*  
*This page is a raw mirror with no AI summary, no editorial enrichment, and no Parkinson's-specific filtering.*