Advance Care Planning in the Dementias: Culturally-Tailored Caregiver Education for African Americans

African Americans face significantly greater risk of Alzheimer s Disease and other dementias than white Americans but receive disproportionately less attention to dementia screening and supportresulting in a silent epidemic in this underserved populationAdvance Care Treatment PlanACT Planis a culturally tailored caregiver education program for African American dementia caregivers with decisional responsibility that was previously evaluated in an RstudyThe program comprises fourhour group sessions of instruction with interactive exercises and homeworkIn a randomized controlled trialRAGoutcomes included significant improvements in caregiver knowledge and self efficacy in advance care treatment decision making for loved ones with dementiaWhile found effectivethe above intervention was delivered in person by content expertswhich is neither practical nor cost effective for wide dissemination of this much needed form of supportThus alternative means of delivery are desirableIn African American communities many faith based organizations maintain active health ministriesmaking them a natural resource with personnel that provide valuable service to members of their congregations and other community membersThis FastTrack project will produce and evaluate a self directed multimedia version of the ACT Plan programto be calledACT Plan mthat can be facilitated by localnon expert volunteers from health ministries of faith based organizationsand othersIf successfulthis will enable wide dissemination of this form of caregiver education in African American communitiesPhase I AimsProduce a prototype module of the ACT Plan mprogramConduct usability testing with three test groups using the prototype moduleAssess usability data and caregiver outcomesPhase II AimsProduce all modules of the ACT Plan mprogramProduce website for streaming and downloads of program materialsAssess impact of ACT Plan mon caregiver knowledge and self efficacy in a randomized controlled trialWe hypothesize that caregivers receiving ACT Plan mwill attain significant improvements in knowledge and self efficacy outcomes comparable to those of the original ACT Plan programCommercial productACT Plan mwill be a standardizedevidence based caregiver education program for use by faith based and secular health advocacy organizations serving the African American communityas well as private individualsThe program will be accessible online with video streaming and downloadable print materialsand in hard copy formatDVDflash driveand printed materialsfor low resource settingsportabilitylending librariesand users without web accessThis new resource will empower community based health advocacy organizations to better address dementia care in underserved African American communitiesIt will be the first evidence basedculturally tailoredself directed multimedia dementia caregiver education program to aid African Americans in managing advance care planning and end of life decision makingPublic health benefits include reduced suffering and costs of end of life care for families and society Project NarrativeAdvance Care Treatment PlanACT Planis a culturally tailored caregiver education program for African American dementia caregivers with decisional responsibilityIt was previously evaluated in an Rstudy that found significant improvements in caregiver knowledge and selfefficacy regarding advance care treatment planning and decision making for loved ones with dementiaThis FastTrack project will develop and evaluate a multimedia formACT Plan mthat 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