No abstract

Research is limited on end-of-life (EOL) treatment decisions made by African American (AA) family caregivers. In a pilot study we examined feasibility of implementing an advance care treatment plan (ACT-Plan), a group-based education intervention, with AA dementia caregivers. Cardiopulmonary resuscitation (CPR), mechanical ventilation (MV) and tube feeding (TF) were EOL treatments discussed in the ACT-Plan. In a 4-week pre/posttest two-group design at urban adult daycare centers, 68 caregivers were assigned to the ACT-Plan or attention-control health promotion conditions. Theoretically based, the ACT-Plan included strategies to enhance knowledge, self-efficacy, and behavioral skills to make EOL treatment plans in advance. Findings strongly suggest that the ACT-Plan intervention is feasible and appropriate for AA caregivers. Self-efficacy and knowledge about dementia, CPR, MV and TF increased with ACT-Plan but not attention control condition. More ACT-Plan participants than control participants developed an advance care plan for relatives with dementia. Findings warrant a randomized efficacy trial.

A specialized brain autopsy recruitment program was implemented within the context of advance medical directives and end-of-life treatment decisions. The program was implemented within the framework of a larger study. The purpose of the program was to (1) improve the rate of consent for brain autopsy among African Americans diagnosed with stroke and dementia, and (2) obtain more empirical information on the underlying reasons for the low response rate (4%) in this minority group. A convenience sample of 133 patient and family caregiver pairs was selected for participation. Face-to-face, open-ended interviews were conducted to ascertain reasons for autopsy preferences and to identify respondents interested in the postmortem procedure. Preferences for brain autopsy were ascertained and individuals interested in the procedure were subsequently followed through death or over the 2 1/2 year course of the study. Brain necropsies were conducted on patients requesting the examination. Thirty-six (36) patient and family pairs consented to the procedure, 16 were indecisive and 81 refused. Factors influencing decisions included existing attitudes toward autopsy, family agreement regarding the procedure, and assurance that funeral arrangements would not be delayed. Ninety deaths and two autopsies were conducted before implementation of the specialized recruitment program, yielding a 2.22% completion rate, and 34 deaths with 10 postmortems conducted within the time frame of the recruitment study, yielding a 29% autopsy completion rate. Fisher exact test (p < 0.0001) revealed a significant difference in the proportion of autopsies completed before and after implementation of the specialized recruitment program. Findings strongly suggest that culturally sensitive recruitment programs may increase the rate of autopsy request made by African American caregivers for relatives diagnosed with dementia and stroke. To obtain a higher rate of consent than that obtained in the general population, the program must contain ethnically sensitive recruitment strategies.

Background and Objectives: African-American family caregivers may have insufficient knowledge to make informed end-of-life (EOL) decisions for relatives with dementias. Advance Care Treatment Plan (ACT-Plan) is a community-based education intervention to enhance knowledge of dementia and associated EOL medical treatments, self-efficacy, intentions, and behavior (written EOL care plan). This study evaluated efficacy of the intervention compared to attention control. Research Design and Methods: In a theoretically based, 2-group, cluster randomized controlled trial, 4 similar Midwestern urban megachurches were randomized to experimental or control conditions. Each church recruited African-American caregivers, enrolling concurrent waves of 5 to 9 participants in 4 weekly 1-hour sessions (358 total: ACT-Plan n = 173, control n = 185). Dementia, cardiopulmonary resuscitation (CPR), mechanical ventilation (MV), and tube feeding (TF) treatments were discussed in ACT-Plan classes. Participants completed assessments before the initial class, after the final class (week 4), and at week 20. Repeated measures models were used to test the intervention effect on changes in outcomes across time, adjusting for covariates as needed. Results: Knowledge of CPR, MV, TF, and self-efficacy to make EOL treatment decisions increased significantly more in the ACT-Plan group at weeks 4 and 20. Knowledge of dementia also increased more in the ACT-Plan group at both points, reaching statistical significance only at week 20. Intentions to make EOL treatment decisions and actually an advance care plan were similar between treatment arms. Discussion and Implications: Findings demonstrate promise for ACT-Plan to increase informed EOL treatment decisions for African American caregivers of individuals with dementias.