Incentives and barriers to research participation and brain donation among African Americans.

Successful African American recruitment for aging research requires sensitivity to factors that influence participation. In this work, a structured face-to-face educational interview was used to recruit African Americans for a longitudinal aging study and to collect information about attitudes related to research. The interview was designed to build trust and respect for research and to educate participants about the need for minority participants. Of the 91 African Americans aged 65 and older who completed interviews, 65 (71%) agreed to participate in the longitudinal study and approximately half agreed to brain donation. Those who enrolled and consented to brain donation were more likely to consider benefit to themselves or direct family unit as the main motivator for participation (P < .01). The study also found a significant increase in agreement to brain donation across enrollment periods (P = .0005).

University of Kentucky Sanders-Brown healthy brain aging volunteers: donor characteristics, procedures and neuropathology.

Cognitively intact elderly research volunteers at the University of Kentucky have been recruited, followed longitudinally, and autopsied with extensive neuropathological evaluations since 1989. To date, the cohort has recruited 1,030 individuals with 552 participants being actively followed, 363 deceased, and 273 autopsied. An extensive database has been constructed with continuous updates that include textured clinical, neuropsychological, neuroimaging, and pathological information. The history, demographics, clinical observations, and pathological features of this research cohort are described. We also explain some of the evolving methodologies and the academic contributions that have been made due to this motivated group of older Kentuckians.

African American participation in Alzheimer's disease research that includes brain donation.

Historically, minority groups have been underrepresented in research and clinical trials. The lack of participation by minorities has been attributed to a variety of factors including a mistrust of the predominately white research establishments and a lack of education about the purpose of research. The current study was designed to determine African American interest in Alzheimer's disease (AD) research and to recruit African Americans as normal controls in current AD studies with the goal of eventually gaining consent for brain donation upon death. Participants were 46 African Americans aged 65 or older, who were interviewed about the knowledge of medical procedures and experience with research. After initial recruitment interviews, 31.7% of participants agreed to yearly testing with eventual brain donation. Study findings suggest a moderate relationship between participants' knowledge of medical procedures used to prolong life and willingness to donate one's brain.

Comparison of recruitment efforts targeted at primary care physicians versus the community at large for participation in Alzheimer disease clinical trials.

Inefficient and delayed recruitment into clinical trials in Alzheimer disease are major obstacles impeding progress in the discovery of more effective therapeutic strategies to combat this disease. Despite widespread recognition of this problem, limited empirical data demonstrating the effectiveness of specific recruitment strategies are available to guide recruitment endeavors. This study was designed to evaluate the effectiveness of recruitment efforts targeting either the primary care health professionals (PCPs) or patients and families with a community grass-roots outreach event. The primary outcome measure was actual study recruitment and participation in the 4 months postintervention. No research subjects were recruited from the PCP intervention, whereas 69 subjects were recruited into clinical studies from the community grass-roots outreach event activity (0% vs. 28%, P<0.0001, Fisher exact test). Barriers to recruitment success in the PCP arm included a perception of perceived harm to subjects from research participation and fear of losing patients through clinical research participation. Our results suggest that outreach efforts directed at the potential study subject/caregiver are not only cost-effective but are able to easily accomplish the desired result of direct recruitment into clinical research studies.

Variable judgments of decisional capacity in cognitively impaired research subjects.

OBJECTIVES: To compare assessments of the decisional capacity of cognitively impaired patients by research assistants (RAs) and by family caregiver/proxies and to determine whether either or both groups judge capacity differently depending on the specific (hypothetical) research enrollment decision being made. DESIGN: Cross-sectional. SETTING: Three clinics, one each in Ohio, Kentucky, and Illinois. PARTICIPANTS: One hundred forty-nine patients with established dementia diagnoses and their caregiver/proxies. MEASUREMENTS: As part of a longer interview, patients were asked about future enrollment in five hypothetical research projects with varying risks and benefits. After patients reported each decision and reasons for that decision, RAs (using Applebaum and Grisso's four standards) indicated whether the patients were competent to make that decision on their own. In separate interviews, caregiver/proxies were asked for a similar appraisal based on life experience with the patient. RA and proxy judgments were compared. RESULTS: Capacity judgments by RAs and by caregiver/proxies differed according to specific project for most patients. Agreement between RA and caregiver/proxy judgments varied according to project, but agreement was only fair when tested using kappa (range in data 0.21-0.39). Caregiver/proxies appraised 50 patients as competent for all decisions, and RAs assessed 47 as so. Of these, only 24 were the same patients. CONCLUSION: If capacity were assessed anew for each enrollment decision, more potential participants could maintain authority in making those decisions.

African Americans with memory loss: findings from a community clinic in Lexington, Kentucky.

Kentucky's African-American Dementia Outreach Partnership (AADOP) has shown that African-American patients seek dementia care if a clinic is conveniently located and families are educated about the distinction between normal aging and signs of disease. The early identification of dementia allows African Americans access to pharmaceutic treatments that work best early in the course of the disease and provides the opportunity for the patient to plan future care. In the AADOP model, a conveniently located clinic and access to the patient's home were first steps in achieving equality of care. The trust that was built in the community through collaboration with African-American churches has allowed patients and their families to receive help with memory problems and to feel comfortable in seeking help for other medical problems. Maintaining this involvement and responsiveness to the community over the long term is the next challenge for the program.

Dementia, diagnostic disclosure, and self-reported health status.

OBJECTIVES: To investigate the general awareness of cognitive impairment in persons with documented dementia, evaluate the subject's recall of a diagnostic disclosure from a physician and their recollection of the discussion, and determine whether this awareness of cognitive impairment or the recall of diagnostic disclosure is associated with poorer self-rated health scores. DESIGN: Secondary data analysis. SETTING: Three university-based clinical referral sites for dementia illnesses. PARTICIPANTS: Convenience sample of 149 patients with a diagnosis of dementia. MEASUREMENTS: Bivariate and logistic regression models with the outcome variables of patient self-report of memory problems, patient report of being told about memory problems by a physician, and self-reported health scores. RESULTS: Ninety-six of 149 (64.4%) subjects reported that they had memory problems, and this report was independently associated with younger age (P=.01) and higher Mini-Mental State Examination score (P=.02). Thirty-nine (26.2%) subjects reported being told by a physician about a diagnosis of dementia or memory problems. This recall was associated with younger age (P<.001), male sex (P=.04), and higher education level (P=.02). African Americans reported poorer self-rated health scores (odds ratio (OR)=2.4, 95% confidence interval (CI)=1.1-5.1). Persons who reported being told by a physician of a diagnosis of dementia were more likely to report poorer self-rated health (OR=2.5, 95% CI 1.1-5.5). CONCLUSION: Further research is needed to elucidate the relationship between self-rated health and dementia specifically focusing on the potentially negative effects of diagnostic disclosure on self-rated health, further identification of factors that contribute to self-rated health in persons with dementia, and the prognostic value of self-rated health for persons with dementia.

Empirical assessment of a research advance directive for persons with dementia and their proxies.

OBJECTIVES: To evaluate a research advance directive for persons with established dementia diagnoses and their family caregivers or proxies. DESIGN: Prospective randomized, controlled trial. SETTING: Three clinics, one each in Ohio, Kentucky, and Illinois. PARTICIPANTS: At the end of separate interviews about enrollment choices in five types of hypothetical research projects, 149 persons with established dementia diagnoses and their family proxies were randomized to jointly complete the Planning Ahead Together (PAT) document, a research advance directive (n=69) or to remain in the control group (n=80). INTERVENTION: The directive was assessed at two points: immediately after sample members received naturally occurring invitations to participate in other studies and again 2 years after initial enrollment. MEASUREMENTS: Personal enrollment rates, reported ease of enrollment decision for patients and proxies, and proxy comfort were compared between the experimental and control groups. RESULTS: Forty-one dyads were reinterviewed immediately after consent discussions for other trials. Forty-seven patients and 106 proxies were interviewed at 2-year follow-up. There was no evidence immediately after a trial enrollment opportunity or in the follow-up interview that the research advance directive (PAT) assisted patients or proxies. Enrollment rates, decision ease, and proxy comfort and certainty were similar in the PAT and control groups. CONCLUSION: Patient and proxy experience making hypothetical decisions in the interview may have affected enrollment decisions by the PAT and control groups. Although the low number of recruitment attempts and the natural attrition of the geriatric population limit conclusions about effectiveness that may be drawn from this unique data set, the feasibility of a research advance directive is clearly demonstrated.