"I Want to Know Everything ...  ": The Return of Research Results and the Importance of Transparency in the Acceptability of Lumbar Punctures for African American Older Adults.

BACKGROUND: Although African Americans experience the highest risk of Alzheimer's disease (AD), they are dramatically underrepresented in preclinical biomarker research. This is especially true for studies involving lumbar puncture as it may involve more perceived risk even for those participants who are otherwise supportive of research. OBJECTIVE: To understand the unique concerns of African American participants regarding biomarker studies involving lumbar puncture who demonstrate support for AD research. METHODS: Study participants were African American adults contacted through an AD research registry. We employed a novel method used to create hypothetical research studies varying on a set number of factors. The method is designed to collect potential patterns in decision making regarding research participation but differs from experimental vignette design in that the survey is administered with an accompanying qualitive interview to determine the meaning participants ascribe to factors independently and in conjunction with one another. RESULTS: Sixty-one participants each reviewed three randomly selected research scenarios and created their "ideal" study involving lumbar puncture. Scenario variables included: disclosure of research results, racial and ethnic identity of the researcher, recruitment method, and amount of incentive. CONCLUSION: Findings indicate that transparency in the return of AD research results to be the strongest driver of participation, followed by race of the researcher and amount of incentive. Recruitment method had limited impact on hypothetical decision making.

A time for me: A virtual program to engage African American caregivers.

To address the self-care needs of African American family caregivers, a community-engaged approach was used to develop and implement a half-day virtual self-care program. This study evaluates experiences of program attendees. All attendees were emailed an electronic survey containing Likert-type and open-ended questions. Responses were examined for patterns and key content-related categories using inductive content analysis. Eleven attendees responded to the survey. All 11 strongly agreed (64%) or agreed (36%) that the event met their expectations and/or needs. In addition to providing opportunity to take time to engage in self-care, the event created a virtual space for women to focus on themselves. Women spoke about three distinct ways the event met their needs: (1) learning and trying new things, (2) access to resources, and (3) having a shared experience. These findings suggest that virtual programs may be used as an additional resource to support the health of African American women caregivers.

Preliminary assessment of connected speech and language as marker for cognitive change in late middle-aged Black/African American adults at risk for Alzheimer's disease.

Background: Connected speech-language (CSL) has been a promising measure of assessing cognitive decline in populations at-risk for Alzheimer's disease and related dementias (ADRD) populations. A common way to obtain CSL is through using picture description tasks such as the most frequently used image Cookie Theft (CT). However, questions have been raised about using CT for diverse communities. Little is known about the CSL produced in response to this task in Black/African American (BAA) adults aged 48-74. Goals: The present study's goals were to characterize CSL in BAA adults by sex and APOE-ε4 status from Milwaukee in the Wisconsin Registry for Alzheimer's Prevention (WRAP) study when presented with the CT picture description task and to identify differences in CSL output between BAAs and non-Hispanic Whites (NHW). Methods and Procedures: We collected CSL samples from the CT picture from 48 BAA participants and 30 NHW participants from the WRAP participants in Milwaukee, WI group. CSL was analyzed using chi-square tests, T-tests, and ANCOVA. Linear mixed effect regression models were used to determine the association between cognitive status and longitudinal CSL in BAA participants with more than 1 timepoint. Outcomes and Results: Declines in CSL of BAA participants were associated with subtle declines in cognition. Among BAA participants, we found no significant differences in speech measures in terms of sex and APOE-ε4 status. Our results showed no significant differences in speech measures between BAA and NHW groups. Conclusions: CSL analysis provides an inexpensive way to evaluate preclinical changes in cognitive status that may not be as affected by other factors, such as ethnocultural background. Future studies with larger sample sizes and participants from other geographic locations can clarify these findings.

The Wisconsin Alzheimer's Institute Dementia Diagnostic Clinic Network: A community of practice to improve dementia care.

BACKGROUND: The Wisconsin Alzheimer's Institute (WAI) Dementia Diagnostic Clinic Network is a community of practice formed in 1998 as a collaboration of community-based clinics from various healthcare systems throughout the state. Its purpose is to promote the use of evidence-based strategies to provide high quality care throughout Wisconsin for people with dementia. The purpose of this study is to describe the use of a community of practice to facilitate education of healthcare providers on best practices in dementia care, and the implementation of an interprofessional approach to diagnose and manage dementia and related disorders. METHODS: Cross-sectional study of the members of the WAI's Dementia Diagnosis Clinic Network. Characteristics of clinics and healthcare teams, learners' participation in educational events and educational outcomes were collected from evaluation forms. Number and characteristics of patients seen in the memory clinics were collected from de-identified data forms submitted by members to a centralized location for data analysis. RESULTS: The clinic network currently has 38 clinics affiliated with 26 different healthcare systems or independent medical groups in 21 of 72 Wisconsin counties. Most (56%) are based in primary care, 15% in psychiatry, and 29% in neurology. Between 2018 and 2021, we received data on 4710 patients; 92% were ≥65 years old, 60% were female, and 92% were white. Network members meet in-person twice a year to learn about innovations in the field of dementia care and to share best practices. Educational events associated with the network are shown to be relevant, useful, and improve knowledge and skills of participants. CONCLUSION: Communities of practice provide added value via shared best practices and educational resources, continuing education of the health workforce, continuous quality improvement of clinical practices, and adoption of new diagnostic and management approaches in dementia care.