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OpenTrials
Completed

NCT Number: NCT03323411

End-of-life Intervention for African American Dementia Caregivers

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.

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Key information

Conditions

Encephalopathy, Ischemic Brain Diseases Brain Ischemia Cardiovascular Diseases Central Nervous System Diseases Cerebrovascular Disorders Nervous System Diseases Vascular Diseases

Sex eligibility

All sexes

Study type

Observational

About this study

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.

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

"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

Treatment and study plan

Advance Care Treatment Plan

Behavioral

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

Primary outcomes

  1. 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

  2. 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.

  3. 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

  4. 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

  1. Written Care Plan

    Time frame: 3 years

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

Sponsors and collaborators

Lead sponsor

University of Illinois at Chicago

Other

Collaborators

  • National Institute on Aging (NIA)

Registry information

Official study title

Community-based End-of-Life Intervention for African American Dementia Caregivers

Important dates

Study start
2013
Primary completion
2016
Study completion
2019
First posted
Oct 27, 2017
Registry last updated
Dec 10, 2019

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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