Encephalopathy, Ischemic
Conditions
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.
Interventions
BEHAVIORALAdvance Care Treatment Plan
subjects in experimental group are taught information on dementia mechanical ventilation tube feeding and cardiopulmonary resuscitation
Sponsors
National Institute on Aging (NIA)
University of Illinois at Chicago
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Knowledge of dementia | 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) | 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 | 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 | 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
| Measure | Time frame | Description |
|---|---|---|
| Written Care Plan | 3 years | Treatment Decision Questionnaire 3 items dichotomous yes/no measuring actual care plan implemented on CPR, MV, TF |
Outcome results
None listed