End-of-life Intervention for African American Dementia Caregivers

University of Illinois at Chicago355 enrolled

Overview

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.

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.

Study Type

OBSERVATIONAL

Enrollment

355

Conditions

Encephalopathy, Ischemic

Interventions

Advance Care Treatment PlanBEHAVIORAL

subjects in experimental group are taught information on dementia mechanical ventilation tube feeding and cardiopulmonary resuscitation

Eligibility

Sex: ALLHealthy volunteers:

Medical Language ↔ Plain English

"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

Outcomes

Primary Outcomes

Knowledge of dementia

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

Time frame: Three years

Knowledge of cardiopulmonary resuscitation (CPR), mechanical ventilation (MV), tube feeding (TF)

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.

Time frame: Three years

Self efficacy

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

Time frame: Three years

Intention to make a Care Plan

Treatment Decisions Questionnaire measured Intention to make a Care Plan using the 3-item dichotomous (yes/no) items on each CPR, MV and TF.

Time frame: Three years

Secondary Outcomes

Written Care Plan

Treatment Decision Questionnaire 3 items dichotomous yes/no measuring actual care plan implemented on CPR, MV, TF

Time frame: 3 years

Data from ClinicalTrials.gov

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