Advance care treatment plans made before the end of life (EOL) for relatives with dementia save families anguish in times of medical crises, but less than 9% of African Americans (AAs) have made them. Yet, AAs have high morbidity and mortality rates from dementia. We propose a community-based pilot study examining the feasibility of an Advance Care Treatment Plan (ACT-Plan) intervention to help AA caregivers make EOL health care choices about cardiopulmonary resuscitation (CPR), mechanical ventilation (MV), and tube feeding (TF). ACT-Plan, a 4-week education program, emphasizes storytelling, case studies, self- reflection, and guided discussions as strategies to teach knowledge, self-efficacy, and behavioral skills related to EOL advance care treatment plans. In a pretest and 4-week posttest, two-condition randomized design, 64 caregivers will be assigned to either ACT-Plan or attention control groups at different sites respectively and asked to complete questionnaires and an interview.
Specific aims are to describe: 1) protocol adherence (attrition rate, attendance, instrument completion) and 2) change in caregivers' outcomes: (a) knowledge about dementia, CPR, MV, and TF; (b) self-efficacy regarding their advance care decisions about CPR, MV, and TF; and (c) decision to develop an advance care plan for relatives diagnosed with dementia. We expect that 85% of the subjects will be retained; 80% will attend all four sessions; 80% will arrive on time for all four sessions; and 100% will have completed at least 80% of the items at pretest and posttest on each instrument. Comparing pretest and posttest values within groups, we expect an increase in knowledge, self-efficacy, and decision to develop advance care plans for the ACT-Plan condition but not for the attention control condition. Lay: Few African Americans have made plans about the treatments that they want when they are living with dementia. We will see if presenting an educational program about advance care treatment plans (ACT-Plan) to African American caregivers of relatives with dementia will help them have confidence about making treatment decisions for their relatives. ? ? ?
| Bonner, Gloria J; Wang, Edward; Wilkie, Diana J et al. (2014) Advance care treatment plan (ACT-Plan) for African American family caregivers: a pilot study. Dementia (London) 13:79-95 |
| Watkins, Yashika J; Bonner, Gloria J; Wang, Edward et al. (2012) Relationship among Trust in Physicians, Demographics, and End-of-life Treatment Decisions Made by African American Dementia Caregivers. J Hosp Palliat Nurs 14:238-243 |
