African Americans face significantly greater risk of Alzheimers Disease and other dementias than white Americans but receive disproportionately less attention to dementia screening and support, resulting in a silent epidemic in this underserved population. Advance Care Treatment Plan (ACT-Plan) is a culturally-tailored caregiver education program for African American dementia caregivers with decisional responsibility that was previously evaluated in an R01 study. The program comprises four 1-hour group sessions of instruction with interactive exercises and homework. In a randomized controlled trial (R01AG043485), outcomes included significant improvements in caregiver knowledge and self-efficacy in advance care treatment decision-making for loved ones with dementia. While found effective, the above intervention was delivered in person by content experts, which is neither practical nor cost-effective for wide dissemination of this much-needed form of support. Thus alternative means of delivery are desirable. In African American communities many faith-based organizations maintain active health ministries, making them a natural resource with personnel that provide valuable service to members of their congregations and other community members. This FastTrack project will produce and evaluate a self-directed multimedia version of the ACT-Plan program, to be called ACT-Plan(m), that can be facilitated by local, non-expert volunteers from health ministries of faith-based organizations, and others. If successful, this will enable wide dissemination of this form of caregiver education in African American communities. Phase I Aims: 1. Produce a prototype module of the ACT-Plan(m) program. 2. Conduct usability testing with three test groups using the prototype module. 3. Assess usability data and caregiver outcomes. Phase II Aims: 1. Produce all modules of the ACT-Plan(m) program. 2. Produce website for streaming and downloads of program materials. 3. Assess impact of ACT-Plan(m) on caregiver knowledge and self-efficacy in a randomized controlled trial. We hypothesize that caregivers receiving ACT-Plan(m) will attain significant improvements in knowledge and self-efficacy outcomes comparable to those of the original ACT-Plan program. Commercial product. ACT-Plan(m) will be a standardized, evidence-based caregiver education program for use by faith-based and secular health advocacy organizations serving the African American community, as well as private individuals. The program will be accessible online with video streaming and downloadable print materials, and in hard copy format (DVD, flash drive, and printed materials) for low-resource settings, portability, lending libraries, and users without web access. This new resource will empower community-based health advocacy organizations to better address dementia care in underserved African American communities. It will be the first evidence-based, culturally-tailored, self-directed multimedia dementia caregiver education program to aid African Americans in managing advance care planning and end of life decision-making. Public health benefits include reduced suffering and costs of end of life care for families and society.
Public Health Relevance Statement: Project(Narrative( ( Advance Care Treatment Plan (ACT-Plan) is a culturally-tailored caregiver education program for African American dementia caregivers with decisional responsibility. It was previously evaluated in an R01 study that found significant improvements in caregiver knowledge and self- efficacy regarding advance care treatment planning and decision-making for loved ones with dementia. This FastTrack project will develop and evaluate a multimedia form, ACT-Plan(m), that is suitable for wide dissemination in underserved African American communities through faith-based and secular organizations focused on reducing disparities in dementia care and caregiver support. (
NIH Spending Category: Acquired Cognitive Impairment; Aging; Alzheimer's Disease; Alzheimer's Disease including Alzheimer's Disease Related Dementias (AD/ADRD); Behavioral and Social Science; Brain Disorders; Caregiving Research; Clinical Research; Dementia; Health Disparities; Minority Health; Neurodegenerative
Project Terms: Address; Advance Care Planning; advocacy organizations; Affect; African American; Alzheimer's disease risk; Attention; base; caregiver education; Caregiver support; Caregivers; caregiving; Caring; caucasian American; Cessation of life; Church; Communities; cost; cost effective; Data; Decision Making; Dementia; dementia care; Dementia caregivers; Disease; disparity reduction; Distress; Educational Intervention; end of life; end of life care; Epidemic; evidence base; Exercise; Face; Family; Family member; Goals; Health; Health Benefit; health disparity; Healthcare Systems; Hour; Human Resources; improved; Individual; innovation; Instruction; Internet; Intervention; Knowledge; Libraries; loved ones; Medical; member; Motivation; Multimedia; Natural Resources; Outcome; Patients; Persons; Phase; portability; Positioning Attribute; Privatization; Procedures; programs; prototype; Public Health; Quality of life; Race; racial and ethnic; Randomized Controlled Trials; recruit; Religion and Spirituality; Reporting; Resources; screening; Self Efficacy; Self-Direction; Services; Societies; Standardization; Stream; Testing; Training; treatment planning; Underserved Population; usability; volunteer; web site
