End-of-life Intervention for African American Dementia Caregivers

NCT03323411 | Completed DMC

• 2 other identifiers: 2013-04945R01AG043485-05
• Study Type: observational
• Target: 355
• Locations: 0 countries
• Sites: N/A

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.

Conditions

Encephalopathy, Ischemic

Outcome Measures

Primary Outcomes (4)

• 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

  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.

  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

  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.

  Three years

Secondary Outcomes (1)

• Written Care Plan

  3 years

Study Arms (1)

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

Behavioral: Advance Care Treatment Plan

Interventions

Advance Care Treatment Plan BEHAVIORAL

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

Intervention and attention control

Eligibility Criteria

• Gender Eligibility Details: 301 african american females and 54 african american males
• Healthy Volunteers: Yes
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Probability Sample

Study Population

African American family caregivers over the age of 18 who attend four specific urban mega churches who meet the eligibility criteria for the study.

You may qualify if:

• 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

You may not qualify if:

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

Sponsors & Collaborators

• University of Illinois at Chicago: lead
• National Institute on Aging (NIA): collaborator

MeSH Terms

Conditions

Brain Ischemia

Condition Hierarchy (Ancestors)

Cerebrovascular Disorders; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Vascular Diseases; Cardiovascular Diseases

Study Officials

• Gloria J Bonner, PhD

  University of Illinois at Chicago

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Principal Investigator

Study Record Dates

• First Submitted: October 5, 2017
• First Posted: October 27, 2017
• Study Start: August 15, 2013
• Primary Completion: September 10, 2016
• Study Completion: May 31, 2019
• Last Updated: December 10, 2019

Record last verified: 2019-12

Data Sharing

• IPD Sharing: Will not share