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.

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.

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.

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.

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.

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.

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.