Deborah D. Danner

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.

Speaking of research advance directives: Planning for future research participation

Objective: To examine one model of research advance directive as a possible way to reduce the mismatch between patient and proxy choices and also to learn more about how patients with mild to moderate dementia may want to keep decision making or cede it to their proxies in the future. Methods: Separate interviews were conducted with 149 dyads of dementia patients and family proxies about future enrollment in five types of research. Subsequent joint interviews were conducted with 69 of those dyads to discuss their separately articulated decisions and ask whether the patient prefers future enrollment decisions to be made as he or she directs today or as the proxy deems best in the future. Results: Patients chose to cede future decision making to their proxies in 82.9% of the trials. Patients ceded decisions to their proxies in 80.7% of those trials about which the dyad had given opposite answers (n = 74, 49.7%). Patients who had expressed discomfort about the prospect of the proxy making an enrollment decision in a trial (n = 49, 32.9%) ceded decision making to their proxies in 45.7% of those trials. Conclusions: Both patients and proxies were willing to discuss future research enrollment in the context of an advance directive for research. Such a document may be helpful to proxies and researchers in the future to judge the types of research and associated risks patients are willing to enroll in. Although most patients willingly cede future decisions to their proxies, a sizeable minority do not wish to do so.

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.

Dementia, Diagnostic Disclosure, and Self‐Reported Health Status

OBJECTIVES: To investigate the general awareness of cognitive impairment in persons with documented dementia, evaluate the subjects 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.

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.

African American caregivers An exploration of pathways and barriers to a diagnosis of Alzheimer's disease for a family member with dementia

Despite the significance of an early diagnosis of Alzheimers disease (AD), African Americans are diagnosed in later stages of the disease and present with greater cognitive impairment at the time of diagnosis when compared to Euro-Americans. To this end, there exists a paucity of research on diagnostic pathways among African Americans with dementia. More specifically, few studies have explored help-seeking pathways from the initial manifestation of symptoms until an actual diagnosis of Alzheimers disease was received from the perspective of African American caregivers. Thus, the present study examined the retrospective experiences of 17 African American caregivers who were given a diagnosis of Alzheimers disease for a family member with dementia. Participants completed face-to-face semi-structured interviews. Study findings revealed a complex interplay between the patient with dementia, entities that comprise their social support network, and clinicians.

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).

LATE‐LIFE LEARNERS AT THE UNIVERSITY: THE DONOVAN SCHOLARS PROGRAM AT AGE TWENTY‐FIVE

The Donovan Scholars Program (DSP) at the University of Kentucky allows persons over the age of 65 to take, without payment of fee, any regular course offered by the University. It also allows individuals 60 and older to register without charge for a range of classes specifically designed for older adults. The program was the nations first to offer tuition waivers to older adults and it has served as a model for similar programs throughout the country. The basic premise of such programs is that institutions of higher education are in a unique position to enrich the lives of the nations older citizens and have a social responsibility to do so. There are now over 1000 colleges and universities offering tuition waivers and other special services for older adults (Chelsvig & Timmer‐man, 1982; Moyer & Logo, 1987). Despite the large number of higher education programs for older adults, there have been surprisingly few studies of their impact or effectiveness. Previous work has primarily focused on description...

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.

African Americans with Memory Loss: Findings from a Community Clinic in Lexington, Kentucky

Kentuckys 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 patients 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.